[Science and ethics, therapeutic misconception and mirage].

PubMed

Raymond, J; Long, H

2008-12-01

Medical practice changes constantly. Ethical imperatives are however incorrigible. How can we reconcile ethics, practice and progress? Some bioethicians argue that research and care should be disentangled to minimize the 'therapeutic misconception', a clinical propensity to believe that patients are the object of medical care, while in fact they are the subjects of a scientific experiment. On the contrary, we believe that clinical research should be an integral part of the good practice. A divorce between research and clinical practice leads to an incorrigible medicine, liable to the therapeutic mirage, that is the false belief that everything modern medicine can offer has been proved beneficial. But both therapeutic misconception and mirage are possible because of a misunderstanding of either research or clinical practice. In this essay we review ethical principles behind clinical trial methodology and attempt to reconcile ethics, science and clinical practice. Not only should clinical research be integrated to the good practice of medicine, it should also be part of training in our specialty.

A review of improved ethical practices in environmental and public health research: case examples from native communities.

PubMed

Quigley, Dianne

2006-04-01

This article presents a review of 14 case studies and articles of research ethics issues in the conduct of environmental and public health research with Native American and other indigenous populations. The purpose of this review is to highlight new practices in the ethical conduct of research with native community populations. The findings from this review can promote more dialogue and policy development on the issue of community protections in research. Formal guidelines exist in ethical codes for individual rights as human subjects, but there is a lack of development on community rights in the ethics of research. This review illustrates how community-based participatory research practices can provide working guidelines that can overcome past research harms. More important, the compilations of guidelines offer tested field methods for improving the ethical conduct of research with native community populations.

Broadening Student Perspectives on Marketing Research Ethics: Development and Applications of a Teaching Module

ERIC Educational Resources Information Center

Handlin, Amy

2012-01-01

This paper describes an ethics module developed by the author to engage marketing research students during the fall semester, when they are bombarded by political polls. The module matches ethically questionable polling practices to similarly troubling practices in marketing research. The goals are to show that ethical principles are not topic- or…

The Ethical Dimension of Teacher Practical Knowledge: A Narrative Inquiry into Chinese Teachers' Thinking and Actions in Dilemmatic Spaces

ERIC Educational Resources Information Center

Chen, Xiangming; Wei, Ge; Jiang, Shuling

2017-01-01

Previous research concerning teacher practical knowledge has revealed its epistemological foundations, content structure and research methodology, but little research examines its ethical dimension. Based on a four-year project in China, this study probes the ethical dimension of an experienced teacher's practical knowledge, explicated in a…

Informed consent for MRI and fMRI research: Analysis of a sample of Canadian consent documents

PubMed Central

2011-01-01

Background Research ethics and the measures deployed to ensure ethical oversight of research (e.g., informed consent forms, ethics review) are vested with extremely important ethical and practical goals. Accordingly, these measures need to function effectively in real-world research and to follow high level standards. Methods We examined approved consent forms for Magnetic Resonance Imaging (MRI) and functional Magnetic Resonance Imaging (fMRI) studies approved by Canadian research ethics boards (REBs). Results We found evidence of variability in consent forms in matters of physical and psychological risk reporting. Approaches used to tackle the emerging issue of incidental findings exposed extensive variability between and within research sites. Conclusion The causes of variability in approved consent forms and studies need to be better understood. However, mounting evidence of administrative and practical hurdles within current ethics governance systems combined with potential sub-optimal provision of information to and protection of research subjects support other calls for more scrutiny of research ethics practices and applicable revisions. PMID:21235768

Ethical Review Issues in Collaborative Research between US and Low – Middle Income Country Partners: A Case Example

PubMed Central

McIntosh, Scott; Sierra, Essie; Dozier, Ann; Diaz, Sergio; Quiñones, Zahira; Primack, Aron; Chadwick, Gary; Ossip-Klein, Deborah J.

2012-01-01

The current ethical structure for collaborative international health research stems largely from developed countries’ standards of proper ethical practices. The result is that ethical committees in developing countries are required to adhere to standards that might impose practices that conflict with local culture and unintended interpretations of ethics, treatments, and research. This paper presents a case example of a joint international research project that successfully established inclusive ethical review processes as well as other groundwork and components necessary for the conduct of human behavior research and research capacity building in the host country. PMID:18554278

Nurse ethical awareness: Understanding the nature of everyday practice.

PubMed

Milliken, Aimee; Grace, Pamela

2017-08-01

Much attention has been paid to the role of the nurse in recognizing and addressing ethical dilemmas. There has been less emphasis, however, on the issue of whether or not nurses understand the ethical nature of everyday practice. Awareness of the inherently ethical nature of practice is a component of nurse ethical sensitivity, which has been identified as a component of ethical decision-making. Ethical sensitivity is generally accepted as a necessary precursor to moral agency, in that recognition of the ethical content of practice is necessary before consistent action on behalf of patient interests can take place. This awareness is also compulsory in ensuring patient good by recognizing the unique interests and wishes of individuals, in line with an ethic of care. Scholarly and research literature are used to argue that bolstering ethical awareness and ensuring that nurses understand the ethical nature of the role are an obligation of the profession. Based on this line of reasoning, recommendations for education and practice, along with directions for future research, are suggested.

The effectiveness of ethics education: a quasi-experimental field study.

PubMed

May, Douglas R; Luth, Matthew T

2013-06-01

Ethical conduct is the hallmark of excellence in engineering and scientific research, design, and practice. While undergraduate and graduate programs in these areas routinely emphasize ethical conduct, few receive formal ethics training as part of their curricula. The first purpose of this research study was to assess the relative effectiveness of ethics education in enhancing individuals' general knowledge of the responsible conduct of research practices and their level of moral reasoning. Secondly, we examined the effects of ethics education on the positive psychological outcomes of perspective-taking, moral efficacy, moral courage, and moral meaningfulness. To examine our research hypotheses, we utilized a pretest-posttest quasi-experimental design consisting of three ethics education groups (control, embedded modules, and stand-alone courses). Findings revealed that both embedded and stand alone courses were effective in enhancing participants' perspective-taking, moral efficacy, and moral courage. Moral meaningfulness was marginally enhanced for the embedded module condition. Moral judgment and knowledge of responsible conduct of research practices were not influenced by either ethics education condition. Contrary to expectations, stand alone courses were not superior to embedded modules in influencing the positive psychological outcomes investigated. Implications of these findings for future research and practice are discussed.

The value of respect in human research ethics: a conceptual analysis and a practical guide.

PubMed

Pieper, I J; Thomson, C J H

2014-01-01

In order to continue to maintain public trust and confidence in human research, participants must be treated with respect. Researchers and Human Research Ethics Committee members need to be aware that modern considerations of this value include: the need for a valid consenting process, the protection of participants who have their capacity for consent compromised; the promotion of dignity for participants; and the effects that human research may have on cultures and communities. This paper explains the prominence of respect as a value when considering the ethics of human research and provides practical advice for both researchers and Human Research Ethics Committee members in developing respectful research practices.

Ethical issues in the export, storage and reuse of human biological samples in biomedical research: perspectives of key stakeholders in Ghana and Kenya.

PubMed

Tindana, Paulina; Molyneux, Catherine S; Bull, Susan; Parker, Michael

2014-10-18

For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics committees. This paper examines stakeholders' perspectives of and responses to the ethical issues arising from these research practices. We employed a qualitative strategy of inquiry for this research including in-depth interviews and focus group discussions with key research stakeholders in Kenya (Nairobi and Kilifi), and Ghana (Accra and Navrongo). The stakeholders interviewed emphasised the compelling scientific importance of sample export, storage and reuse, and acknowledged the existence of some structures governing these research practices, but they also highlighted the pressing need for a number of practical ethical concerns to be addressed in order to ensure high standards of practice and to maintain public confidence in international research collaborations. These concerns relate to obtaining culturally appropriate consent for sample export and reuse, understanding cultural sensitivities around the use of blood samples, facilitating a degree of local control of samples and sustainable scientific capacity building. Drawing on these findings and existing literature, we argue that the ethical issues arising in practice need to be understood in the context of the interactions between host research institutions and local communities and between collaborating institutions. We propose a set of 'key points-to-consider' for research institutions, ethics committees and funding agencies to address these issues.

When Practice Takes Precedence: Conceptions of Inquiry and the Link to Ethical Posture

ERIC Educational Resources Information Center

McArdle, Karen; Birchley, Jacinta; Bruce, Jayne; Hurrell, Alison; Paterson, Sandra; Stephen, Mary

2015-01-01

Using participatory action research (PAR), this paper explores the ethical practice of students engaged in practitioner research in a higher education context. Using narrative enquiry, the paper explores the participants' experiences of practitioner research, including ethical dilemmas that resulted from a conflict of values between the…

Research Ethics III: Publication Practices and Authorship, Conflicts of Interest, and Research Misconduct

ERIC Educational Resources Information Center

Horner, Jennifer; Minifie, Fred D.

2011-01-01

Purpose: In this series of articles--"Research Ethics I", "Research Ethics II", and "Research Ethics III"--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. Method: In "Research Ethics III", they review the RCR domains of publication…

Beyond Research Ethics: Novel Approaches of 3 Major Public Health Institutions to Provide Ethics Input on Public Health Practice Activities.

PubMed

Klingler, Corinna; Barrett, Drue H; Ondrusek, Nancy; Johnson, Brooke R; Saxena, Abha; Reis, Andreas A

2018-02-23

Public health institutions increasingly realize the importance of creating a culture in their organizations that values ethics. When developing strategies to strengthen ethics, institutions will have to take into account that while public health research projects typically undergo thorough ethics review, activities considered public health practice may not be subjected to similar oversight. This approach, based on a research-practice dichotomy, is increasingly being criticized as it does not adequately identify and manage ethically relevant risks to those affected by nonresearch activities. As a reaction, 3 major public health institutions (the World Health Organization, US Centers for Disease Control and Prevention, and Public Health Ontario) have implemented mechanisms for ethics review of public health practice activities. In this article, we describe and critically discuss the different modalities of the 3 approaches. We argue that although further evaluation is necessary to determine the effectiveness of the different approaches, public health institutions should strive to implement procedures to ensure that public health practice adheres to the highest ethical standards.

Legal, ethical and practical considerations in research involving nurses with dyslexia.

PubMed

Gillin, Nicola

2015-09-01

To discuss the legal, ethical and practical considerations in UK studies involving nurses with dyslexia and medication administration errors (MAEs). Nurses with dyslexia are a vulnerable population as they are susceptible to misrepresentation in research, especially that which involves a sensitive topic such as MAEs. Nurses with dyslexia may be particularly vulnerable to research that could exploit, implicate or attribute unsafe practice to them and their disability. Special consideration should be exercised when researching this population. Despite the potential for legal, ethical and practical issues, MAEs and nurses with dyslexia are under-researched areas and warrant further research. Benefits can be gained, not only by participants but also those with a vested interest in how best to support dyslexic nurses in clinical practice. Through effective design, risks can be identified and minimised, and the research made viable, ethically sound and ultimately beneficial to all those involved.

Cross-Cultural Considerations in U.S. Research Ethics Education

PubMed Central

Heitman, Elizabeth

2014-01-01

Demand among graduate and postdoctoral trainees for international research experience brings together students and investigators from increasingly diverse cultural backgrounds around the world. Educators in research ethics and scientific integrity need to address the cultural aspects of both science and ethics to help all trainees learn ethical practices for effective collaboration with a diverse array of partners. NIH and NSF’s mandates for instruction in the responsible conduct of research do not specifically address the needs of international trainees or U.S. trainees who undertake research projects abroad. Nonetheless, research ethics educators’ typical focus on policy and professional standards can offer trainees and faculty investigators helpful insights into differing ethical values and priorities in research. Examination of linguistic differences can also reveal important conceptual frameworks that shape ethical practice. New resources for teaching research integrity in cross-cultural settings can be a valuable addition to the development of shared understanding of the goals of scientific research. PMID:25574262

Ethical issues in trauma-related research: a review.

PubMed

Newman, Elana; Risch, Elizabeth; Kassam-Adams, Nancy

2006-09-01

ETHICAL DECISION-MAKING ABOUT TRAUMA-RELATED STUDIES requires a flexible approach that counters assumptions and biases about victims, assures a favorable ethical cost-benefit ratio, and promotes advancement of knowledge that can benefit survivors of traumatic stress. This paper reviews several ethical issues in the field of traumatic stress: benefit and risks in trauma-related research, whether trauma-related research poses unique risks and if so what those might be, informed consent and mandatory reporting, and supervision of trauma-related research. For each topic, we review potential ethical issues, summarize the research conducted thus far to inform ethical practice, and recommend future practice, research questions and policies to advance the field so that research on trauma can continue to be a win-win situation for all stakeholders in the research enterprise.

Financial remuneration for clinical and behavioral research participation: ethical and practical considerations.

PubMed

Permuth-Wey, Jennifer; Borenstein, Amy R

2009-04-01

Although the practice of providing payment to clinical research participants has been ongoing for more than a century, it remains an ethically controversial topic among members of the research community. The aims of this commentary are to summarize ethical and practical considerations regarding financial remuneration of research participants and to make recommendations for researchers contemplating this practice. A PubMed search was conducted to explore the ethical implications surrounding financial remuneration and review the body of empiric data on this topic. Financial remuneration is perceived to be ethically acceptable by many researchers and research participants and can be helpful in the recruitment process. It is recommended that when investigators are contemplating whether to offer payment to research participants, they should consider the nature of the study and the potential benefits and risks to the participants, institutional or organizational guidelines, and cultural and societal norms specific to the population being studied. Financial remuneration has the ability to serve as a sign of appreciation for the contributions of research participants and a way to facilitate clinical and behavioral research.

Effective Practices in the Delivery of Research Ethics Education: A Qualitative Review of Instructional Methods.

PubMed

Todd, E Michelle; Torrence, Brett S; Watts, Logan L; Mulhearn, Tyler J; Connelly, Shane; Mumford, Michael D

2017-01-01

In order to delineate best practices for courses on research ethics, the goal of the present effort was to identify themes related to instructional methods reflected in effective research ethics and responsible conduct of research (RCR) courses. By utilizing a qualitative review, four themes relevant to instructional methods were identified in effective research ethics courses: active participation, case-based activities, a combination of individual and group approaches, and a small number of instructional methods. Three instructional method themes associated with less effective courses were also identified: passive learning, a group-based approach, and a large number of instructional methods. Key characteristics of each theme, along with example courses relative to each theme, are described. Additionally, implications regarding these instructional method themes and recommendations for best practices in research ethics courses are discussed.

Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.

PubMed

Carrieri, D; Bewshea, C; Walker, G; Ahmad, T; Bowen, W; Hall, A; Kelly, S

2016-09-27

Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Conceptualizing boundaries for the professionalization of healthcare ethics practice: a call for empirical research.

PubMed

Brown, Nancy C; McGee, Summer Johnson

2014-12-01

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice.

A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

PubMed

Makhoul, Jihad; Chehab, Rana F; Shaito, Zahraa; Sibai, Abla M

2018-05-15

Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics. An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2013. Scoping review yielded 164 eligible articles for analyses. Ethical research practices, including obtaining institutional approval, access to the community/research site, and informed consent/assent from the research participants, were reported in 48.2, 54.9, and 53.7% of the publications, respectively. Institutional approval was significantly more likely to be reported when the research was biomedical in nature compared to public health and social (91.7% vs. 54.4 and 32.4%), when the study employed quantitative compared to qualitative or mixed methodologies (61.7% vs. 26.8 and 42.9%), and when the journal required a statement on ethical declarations (57.4% vs. 27.1%). Institutional approval was least likely to be reported in papers that were sole-authored (9.5%), when these did not mention a funding source (29.6%), or when published in national journals (0%). Similar results were obtained for access to the community site and for seeking informed consent/assent from study participants. The responsibility of inadequacies in adherence to ethical research conduct in crisis settings is born by a multitude of stakeholders including funding agencies, institutional research boards, researchers and international relief organizations involved in research, as well as journal editors, all of whom need to play a more proactive role for enhancing the practice of ethical research conduct in conflict settings.

Medical ethics research between theory and practice.

PubMed

ten Have, H A; Lelie, A

1998-06-01

The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illness of contemporary medical ethics focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensen's theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us.

The Ethics of Doing Ethics.

PubMed

Hansson, Sven Ove

2017-02-01

Ethicists have investigated ethical problems in other disciplines, but there has not been much discussion of the ethics of their own activities. Research in ethics has many ethical problems in common with other areas of research, and it also has problems of its own. The researcher's integrity is more precarious than in most other disciplines, and therefore even stronger procedural checks are needed to protect it. The promotion of some standpoints in ethical issues may be socially harmful, and even our decisions as to which issues we label as "ethical" may have unintended and potentially harmful social consequences. It can be argued that ethicists have an obligation to make positive contributions to society, but the practical implications of such an obligation are not easily identified. This article provides an overview of ethical issues that arise in research into ethics and in the application of such research. It ends with a list of ten practical proposals for how these issues should be dealt with.

Research ethics consultation: ethical and professional practice challenges and recommendations.

PubMed

Sharp, Richard R; Taylor, Holly A; Brinich, Margaret A; Boyle, Mary M; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin

2015-05-01

The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical and Translational Science Award Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: (1) managing multiple institutional roles and responsibilities, (2) managing sensitive information, and (3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services.

Research Ethics Consultation: Ethical and Professional Practice Challenges and Recommendations

PubMed Central

Sharp, Richard R.; Taylor, Holly A.; Brinich, Margaret A.; Boyle, Mary M.; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin

2015-01-01

The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include: assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical Translational Science Award (CTSA) Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: 1) managing multiple institutional roles and responsibilities, 2) managing sensitive information, and 3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services. PMID:25607942

Internet Research Ethics and the Policy Gap for Ethical Practice in Online Research Settings

ERIC Educational Resources Information Center

Warrell, Jacqueline G.; Jacobsen, Michele

2014-01-01

A growing number of education and social science researchers design and conduct online research. In this review, the Internet Research Ethics (IRE) policy gap in Canada is identified along with the range of stakeholders and groups that either have a role or have attempted to play a role in forming better ethics policy. Ethical issues that current…

Human Subjects Protection: A Source for Ethical Service-Learning Practice

ERIC Educational Resources Information Center

Wendler, Rachael

2012-01-01

Human subjects research ethics were developed to ensure responsible conduct when university researchers learn by interacting with community members. As service-learning students also learn by interacting with community members, a similar set of principles may strengthen the ethical practice of service-learning. This article identifies ethical…

Bioteaching Ethics and the Researcher-Teacher: Considerations for Teacher Education.

ERIC Educational Resources Information Center

Lovat, Terence J.

1995-01-01

This article examines the teacher researcher movement, discussing ethical matters related to action research. In the medical domain, biomedical ethics directs human interventions resulting from clinical and research practice. The paper suggests a discipline called "bioteaching ethics" could help direct human interventionary actions of teachers…

Beyond Compliance Checking: A Situated Approach to Visual Research Ethics.

PubMed

Lenette, Caroline; Botfield, Jessica R; Boydell, Katherine; Haire, Bridget; Newman, Christy E; Zwi, Anthony B

2018-03-19

Visual research methods like photography and digital storytelling are increasingly used in health and social sciences research as participatory approaches that benefit participants, researchers, and audiences. Visual methods involve a number of additional ethical considerations such as using identifiable content and ownership of creative outputs. As such, ethics committees should use different assessment frameworks to consider research protocols with visual methods. Here, we outline the limitations of ethics committees in assessing projects with a visual focus and highlight the sparse knowledge on how researchers respond when they encounter ethical challenges in the practice of visual research. We propose a situated approach in relation to visual methodologies that encompasses a negotiated, flexible approach, given that ethical issues usually emerge in relation to the specific contexts of individual research projects. Drawing on available literature and two case studies, we identify and reflect on nuanced ethical implications in visual research, like tensions between aesthetics and research validity. The case studies highlight strategies developed in-situ to address the challenges two researchers encountered when using visual research methods, illustrating that some practice implications are not necessarily addressed using established ethical clearance procedures. A situated approach can ensure that visual research remains ethical, engaging, and rigorous.

A right to confidentiality or a duty to disclose? Ethical guidance for conducting prevention research with children and adolescents.

PubMed

Hiriscau, Ioana E; Stingelin-Giles, Nicola; Stadler, Christina; Schmeck, Klaus; Reiter-Theil, Stella

2014-06-01

Conducting prevention research with children and adolescents raises ethical challenges especially regarding confidentiality. Research with children and adolescents often applies methodologies which aims at the disclosure of sensitive information about practices that impact on adolescent mental and physical health such as sexual activity, smoking, alcohol consumption, illegal drug use, self-damaging and suicidal behaviour (ideation and attempts). The scope of the article is to review normative documents that cover topics relevant for confidentiality when conducting research with children and adolescents. A systematic literature search in MEDLINE was performed to identify relevant international and European guidelines and codes of ethics that cover health, behavioural and social science research. Additionally, the European Research Ethics website was consulted for double check. However, none of the documents aimed at biomedical, behavioural or social research offers concrete support in resolving practical research ethics problems regarding confidentiality. The codes show a lack of clarity in any circumstances in which the researcher might have an obligation to breach confidentiality by disclosing sensitive information. Only little information is given on what kind of disclosed information, if disclosed, might justify breaching confidentiality. The findings prove a need for normative documents to address the ethical questions regarding confidentiality arising in research practice explicitly and specifically. Moreover, further forms of ethical guidance should be developed to support ethical research with children and adolescents.

The ethical dimensions of wildlife disease management in an evolutionary context.

PubMed

Crozier, Gkd; Schulte-Hostedde, Albrecht I

2014-08-01

Best practices in wildlife disease management require robust evolutionary ecological research (EER). This means not only basing management decisions on evolutionarily sound reasoning, but also conducting management in a way that actively contributes to the on-going development of that research. Because good management requires good science, and good science is 'good' science (i.e., effective science is often science conducted ethically), good management therefore also requires practices that accord with sound ethical reasoning. To that end, we propose a two-part framework to assist decision makers to identify ethical pitfalls of wildlife disease management. The first part consists of six values - freedom, fairness, well-being, replacement, reduction, and refinement; these values, developed for the ethical evaluation of EER practices, are also well suited for evaluating the ethics of wildlife disease management. The second part consists of a decision tree to help identify the ethically salient dimensions of wildlife disease management and to guide managers toward ethically responsible practices in complex situations. While ethical reasoning cannot be used to deduce from first principles what practices should be undertaken in every given set of circumstances, it can establish parameters that bound what sorts of practices will be acceptable or unacceptable in certain types of scenarios.

Assessing the Public’s Views in Research Ethics Controversies: Deliberative Democracy and Bioethics as Natural Allies

PubMed Central

Kim, Scott Y. H.; Wall, Ian F.; Stanczyk, Aimee; Vries, Raymond De

2010-01-01

In a Liberal Democracy, Policy Decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a long-standing research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed. PMID:19919315

Assessing the public's views in research ethics controversies: deliberative democracy and bioethics as natural allies.

PubMed

Kim, Scott Y H; Wall, Ian F; Stanczyk, Aimee; De Vries, Raymond

2009-12-01

In a liberal democracy, policy decisions regarding ethical controversies, including those in research ethics, should incorporate the opinions of its citizens. Eliciting informed and well-considered ethical opinions can be challenging. The issues may not be widely familiar and they may involve complex scientific, legal, historical, and ethical dimensions. Traditional surveys risk eliciting superficial and uninformed opinions that may be of dubious quality for policy formation. We argue that the theory and practice of deliberative democracy (DD) is especially useful in overcoming such inadequacies. We explain DD theory and practice, discuss the rationale for using DD methods in research ethics, and illustrate in depth the use of a DD method for a longstanding research ethics controversy involving research based on surrogate consent. The potential pitfalls of DD and the means of minimizing them as well as future research directions are also discussed.

A Selected Review of the Underpinnings of Ethics for Human Performance Technology Professionals--Part One: Key Ethical Theories and Research.

ERIC Educational Resources Information Center

Dean, Peter J.

1993-01-01

Provides a review of the key ethical theories and relevant empirical research relating to the practice of human performance technology. Topics addressed include ethics, morals, business ethics, ethics officers, empiricism versus normative ethical theory, consequentialism, utilitarianism, nonconsequentialism, Kohlberg model of cognitive moral…

Rethinking Ethics Review as Institutional Discourse

ERIC Educational Resources Information Center

Halse, Christine; Honey, Anne

2007-01-01

In this article, the authors trace the emergence of an institutional discourse of ethical research and interrogate its effects in constituting what ethical research is taken to be and how ethical researchers are configured. They illuminate the dissonance between this regime of truth and research practice and the implications for the injunction to…

Symbiotic empirical ethics: a practical methodology.

PubMed

Frith, Lucy

2012-05-01

Like any discipline, bioethics is a developing field of academic inquiry; and recent trends in scholarship have been towards more engagement with empirical research. This 'empirical turn' has provoked extensive debate over how such 'descriptive' research carried out in the social sciences contributes to the distinctively normative aspect of bioethics. This paper will address this issue by developing a practical research methodology for the inclusion of data from social science studies into ethical deliberation. This methodology will be based on a naturalistic conception of ethical theory that sees practice as informing theory just as theory informs practice - the two are symbiotically related. From this engagement with practice, the ways that such theories need to be extended and developed can be determined. This is a practical methodology for integrating theory and practice that can be used in empirical studies, one that uses ethical theory both to explore the data and to draw normative conclusions. © 2010 Blackwell Publishing Ltd.

Ethical Issues in Internet Research: International Good Practice and Irish Research Ethics Documents

ERIC Educational Resources Information Center

Felzmann, Heike

2013-01-01

This chapter discusses the main research ethical concerns that arise in internet research and reviews existing research ethical guidance in the Irish context in relation to its application to internet research. The chapter begins with a brief outline of high profile cases in the early history of the internet that highlighted specific emerging…

Feasibility of rapid ethical assessment for the Ethiopian health research ethics review system.

PubMed

Addissie, Adamu; Davey, Gail; Newport, Melanie; Farsides, Bobbie; Feleke, Yeweyenhareg

2015-01-01

One of the challenges in the process of ethical medical research in developing countries, including Ethiopia, is translating universal principles of medical ethics into appropriate informed consent documents and their implementation. Rapid Ethical Assessment (REA) has been suggested as a feasible approach to meet this application gap. In the past few years REA has been employed in few research project in Ethiopia and have been found to be a useful and practical approach. Feasibility assessment of REA for the Ethiopian research setting was conducted between 2012-2013 in order to inform the subsequent introduction of REA into research ethics review and governance system in the country. REA was found to be an appropriate, relevant and feasible venture. We argue that REA can be integrated as part of the ethics review and governance system in Ethiopia. REA tools and techniques are considered relevant and acceptable to the Ethiopian research community, with few practical challenges anticipated in their implementation. REA are considered feasible for integration in the Ethiopian ethics review system.

Ethics and Body Politics: Interdisciplinary Possibilities for Embodied Psychotherapeutic Practice and Research

ERIC Educational Resources Information Center

Allegranti, Beatrice

2011-01-01

Ethical approaches to practice and research in counselling and arts/psychotherapies demand an urgent attention to body politics. Bodies are not neutral; gender, sexuality, ethnicity and class are socio-political aspects that shape our mental, emotional and physical selves and inform our ethical values. Drawing from the author's embodied practice…

Making a commitment to ethics in global health research partnerships: a practical tool to support ethical practice.

PubMed

Murphy, Jill; Hatfield, Jennifer; Afsana, Kaosar; Neufeld, Vic

2015-03-01

Global health research partnerships have many benefits, including the development of research capacity and improving the production and use of evidence to improve global health equity. These partnerships also include many challenges, with power and resource differences often leading to inequitable and unethical partnership dynamics. Responding to these challenges and to important gaps in partnership scholarship, the Canadian Coalition for Global Health Research (CCGHR) conducted a three-year, multi-regional consultation to capture the research partnership experiences of stakeholders in South Asia, Latin America, and sub-Saharan Africa. The consultation participants described persistent inequities in the conduct of global health research partnerships and called for a mechanism through which to improve accountability for ethical conduct within partnerships. They also called for a commitment by the global health research community to research partnership ethics. The Partnership Assessment Toolkit (PAT) is a practical tool that enables partners to openly discuss the ethics of their partnership and to put in place structures that create ethical accountability. Clear mechanisms such as the PAT are essential to guide ethical conduct to ensure that global health research partnerships are beneficial to all collaborators, that they reflect the values of the global health endeavor more broadly, and that they ultimately lead to improvements in health outcomes and health equity.

Ethical issues in pragmatic randomized controlled trials: a review of the recent literature identifies gaps in ethical argumentation.

PubMed

Goldstein, Cory E; Weijer, Charles; Brehaut, Jamie C; Fergusson, Dean A; Grimshaw, Jeremy M; Horn, Austin R; Taljaard, Monica

2018-02-27

Pragmatic randomized controlled trials (RCTs) are designed to evaluate the effectiveness of interventions in real-world clinical conditions. However, these studies raise ethical issues for researchers and regulators. Our objective is to identify a list of key ethical issues in pragmatic RCTs and highlight gaps in the ethics literature. We conducted a scoping review of articles addressing ethical aspects of pragmatic RCTs. After applying the search strategy and eligibility criteria, 36 articles were included and reviewed using content analysis. Our review identified four major themes: 1) the research-practice distinction; 2) the need for consent; 3) elements that must be disclosed in the consent process; and 4) appropriate oversight by research ethics committees. 1) Most authors reject the need for a research-practice distinction in pragmatic RCTs. They argue that the distinction rests on the presumptions that research participation offers patients less benefit and greater risk than clinical practice, but neither is true in the case of pragmatic RCTs. 2) Most authors further conclude that pragmatic RCTs may proceed without informed consent or with simplified consent procedures when risks are low and consent is infeasible. 3) Authors who endorse the need for consent assert that information need only be disclosed when research participation poses incremental risks compared to clinical practice. Authors disagree as to whether randomization must be disclosed. 4) Finally, all authors view regulatory oversight as burdensome and a practical impediment to the conduct of pragmatic RCTs, and argue that oversight procedures ought to be streamlined when risks to participants are low. The current ethical discussion is framed by the assumption that the function of research oversight is to protect participants from risk. As pragmatic RCTs commonly involve usual care interventions, the risks may be minimal. This leads many to reject the research-practice distinction and question the need for informed consent. But the function of oversight should be understood broadly as protecting the liberty and welfare interest of participants and promoting public trust in research. This understanding, we suggest, will focus discussion on questions about appropriate ethical review for pragmatic RCTs.

Ethical Issues and Best Practice Considerations for Internet Research

ERIC Educational Resources Information Center

Colvin, Jan; Lanigan, Jane

2005-01-01

With rapidly increasing public use of the Internet and advances in Web technologies, family and consumer sciences researchers have the opportunity to conduct Internet-based research. However, online research raises critical ethical issues concerning human subjects that have an impact on research practices. This article provides a review of the…

Qualitative Evaluation Methods in Ethics Education: A Systematic Review and Analysis of Best Practices.

PubMed

Watts, Logan L; Todd, E Michelle; Mulhearn, Tyler J; Medeiros, Kelsey E; Mumford, Michael D; Connelly, Shane

2017-01-01

Although qualitative research offers some unique advantages over quantitative research, qualitative methods are rarely employed in the evaluation of ethics education programs and are often criticized for a lack of rigor. This systematic review investigated the use of qualitative methods in studies of ethics education. Following a review of the literature in which 24 studies were identified, each study was coded based on 16 best practices characteristics in qualitative research. General thematic analysis and grounded theory were found to be the dominant approaches used. Researchers are effectively executing a number of best practices, such as using direct data sources, structured data collection instruments, non-leading questioning, and expert raters. However, other best practices were rarely present in the courses reviewed, such as collecting data using multiple sources, methods, raters, and timepoints, evaluating reliability, and employing triangulation analyses to assess convergence. Recommendations are presented for improving future qualitative research studies in ethics education.

The Development of a Taxonomy of Wrongdoing in Medical Practice and Research

PubMed Central

DuBois, James M.; Yates, Elena; Vasher, Meghan

2011-01-01

“Ethical disasters” or egregious violations of professional ethics in medicine often receive substantial amounts of publicity, leading to mistrust of the medical system. Efforts to understand wrongdoing in medical practice and research are hampered by the absence of a clear taxonomy. This article describes the authors’ process of developing a taxonomy based on: (1) reviews of academic literature, ethics codes, government regulations, and cases of wrongdoing; (2) consultation with experts in health law and healthcare ethics; and (3) application of the taxonomy to published cases of wrongdoing in medical research and practice. The resulting taxonomy includes 14 categories of wrongdoing in medical practice, and 15 categories of wrongdoing in medical research. This taxonomy may be useful to oversight bodies, researchers who seek to understand and reduce the prevalence of wrongdoing in medicine, and librarians who index literature on wrongdoing. PMID:22176853

Ethical principles of informed consent: exploring nurses' dual role of care provider and researcher.

PubMed

Judkins-Cohn, Tanya M; Kielwasser-Withrow, Kiersten; Owen, Melissa; Ward, Jessica

2014-01-01

This article describes the ethical principles of autonomy, beneficence, and justice within the nurse researcher-participant relationship as these principles relate to the informed consent process for research. Within this process, the nurse is confronted with a dual role. This article describes how nurses, who are in the dual role of care provider and researcher, can apply these ethical principles to their practice in conjunction with the American Nurses Association's code of ethics for nurses. This article also describes, as an element of ethical practice, the importance of using participant-centered quality measures to aid informed decision making of participants in research. In addition, the article provides strategies for improving the informed consent process in nursing research. Finally, case scenarios are discussed, along with the application of ethical principles within the awareness of the dual role of the nurse as care provider and researcher. Copyright 2014, SLACK Incorporated.

ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH

Cancer.gov

ENRICH Forum: Ethical aNd Regulatory Issues in Cancer ResearcH, designed to stimulate dialogue on ethical and regulatory issues in cancer research and promote awareness of developing policies and best practices.

Improving ethical and participatory practice for marginalized populations in biomedical HIV prevention trials: lessons from Thailand.

PubMed

Allman, Dan; Ditmore, Melissa Hope; Kaplan, Karyn

2014-01-01

This paper presents findings from a qualitative investigation of ethical and participatory issues related to the conduct of biomedical HIV prevention trials among marginalized populations in Thailand. This research was deemed important to conduct, as several large-scale biomedical HIV prevention trials among marginalized populations had closed prematurely in other countries, and a better understanding of how to prevent similar trial closures from occurring in the future was desired. In-depth key informant interviews were held in Bangkok and Chiang Mai, Thailand. Interviews were audio recorded, transcribed, translated and thematically analyzed. The Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials (GPP) guided this work. Fourteen interviews were conducted: 10 with policymakers, academic and community-based researchers and trial staff and four with representatives of non-governmental organizations (NGOs). Suggested ways to improve ethical and participatory practice centered on standards of HIV prevention, informed consent, communication and human rights. In particular, the need to overcome language and literacy differences was identified. Key informants felt communication was the basis of ethical understanding and trust within biomedical HIV prevention trial contexts, and thus fundamental to trial participants' ability to exercise free will. Biomedical HIV prevention trials present opportunities for inclusive and productive ethical and participatory practice. Key informants suggested that efforts to improve practice could result in better relationships between research stakeholders and research investigative teams and by extension, better, more ethical participatory trials. This research took place in Thailand and its findings apply primarily to Thailand. However, given the universality of many ethical considerations, the results of this study can inform the improvement of ethical and participatory practice in other parts of the world where biomedical HIV prevention trials occur, and where clinical trials in marginalized populations continue.

To pray or not to pray: a question of ethics.

PubMed

French, Charlotte; Narayanasamy, Aru

There is a widespread belief that nurses have a duty to provide spiritual care. However, many feel there is still a need for debate surrounding the ethical use of prayer in both nursing research and practice. By using critical reflections and evidence-based literature, this paper develops a discourse on the ethics of prayer as a spiritual intervention in nursing and health care practice. Several key ethical issues are highlighted. In regards to research, lack of informed consent is a major concern in both research and nursing practice. Key ethical issues in practice include questions around intention and authority, e.g. despite the religious beliefs of the nurse, intentions to proselytize must be avoided to protect patient autonomy and avoid abuse of the nurse's authority. Furthermore, prayer has unknown side effects and implications. This paper concludes that, in practice, nurses must reconcile their personal, spiritual beliefs with their professional duties, and while this may be a delicate balance, it is not yet appropriate to encourage or dissuade a patient from their beliefs until appropriate research evidence is produced.

Ethics in research.

PubMed

Bevan, Joan C

2007-04-01

This review will examine research ethics in the context of globalization of clinical trials and recent rapid developments in bioscience. It will focus on international ethical guidelines and the functions of research ethics review boards in research governance. Consent issues in genetic research, which must comply with privacy laws by protecting confidentiality and privacy of personal health data, will be discussed. There has been a rapid expansion of genomic and proteonomic research and biotechnology in the last decade. International ethical guidelines have been updated and the bioscience industry has developed ethics policies. At the same time, problems in academic anesthesia in the US and UK have been identified, leading to recommendations to train physician-scientists in anesthesia to stimulate research activity in the future. Anesthesiologists are joining interdisciplinary research teams and the concept of evidence-based translational research is emerging. Anesthesiologists are moving towards participation in interdisciplinary research teams. They are well placed to speed the translation of research discovery into clinical practice and provide evidence-based perioperative care. This review provides the ethical framework that anesthesiologists will need to meet the challenges of this changing pattern of practice.

The ethical dimensions of wildlife disease management in an evolutionary context

PubMed Central

Crozier, GKD; Schulte-Hostedde, Albrecht I

2014-01-01

Best practices in wildlife disease management require robust evolutionary ecological research (EER). This means not only basing management decisions on evolutionarily sound reasoning, but also conducting management in a way that actively contributes to the on-going development of that research. Because good management requires good science, and good science is ‘good’ science (i.e., effective science is often science conducted ethically), good management therefore also requires practices that accord with sound ethical reasoning. To that end, we propose a two-part framework to assist decision makers to identify ethical pitfalls of wildlife disease management. The first part consists of six values – freedom, fairness, well-being, replacement, reduction, and refinement; these values, developed for the ethical evaluation of EER practices, are also well suited for evaluating the ethics of wildlife disease management. The second part consists of a decision tree to help identify the ethically salient dimensions of wildlife disease management and to guide managers toward ethically responsible practices in complex situations. While ethical reasoning cannot be used to deduce from first principles what practices should be undertaken in every given set of circumstances, it can establish parameters that bound what sorts of practices will be acceptable or unacceptable in certain types of scenarios. PMID:25469160

Research ethics policies and practices in health research institutions in sub-Saharan African countries: results of a questionnaire-based survey.

PubMed

Zielinski, Chris; Kebede, Derege; Mbondji, Peter Ebongue; Sanou, Issa; Kouvividila, Wenceslas; Lusamba-Dikassa, Paul-Samson

2014-05-01

To describe the state of research ethics policies and practices in health research institutions in sub-Saharan African countries. A structured questionnaire was used to solicit information on research ethics from health research institutions. Forty-two sub-Saharan African countries. Key informants from the health research institutions. Existence of institutional ethics review policies and mechanisms. About half (51%) of respondent institutions reported having policies on research ethics and 58% had written policies requiring that researchers obtain informed consent of research participants. About one-third of respondent institutions (34%) had established ethics review committees, 42% required that studies went through ethics review committees and 46% had linkages with national or regional ethics organisations. Regarding operating procedures for ethics review committees, 53% had adopted standard operating procedures. Less than one-quarter of respondent institutions reported having policies in place to monitor ongoing research. Of the institutions that monitored ongoing research, 34% did an annual ethical review and 74% required a periodic written report. Only 36% provided any type of ethics training for staff, including those conducting health research and those who were not members of the ethics review committee. There are substantial gaps in the capacity of health research institutions in the WHO African Region to undertake ethical review of studies before, during and after studies conducted. There is a need to strengthen such capacity in order to ensure the wellbeing of individuals enrolled in studies and that of communities that host these studies. © The Royal Society of Medicine.

Operational effectiveness of blended e-learning program for nursing research ethics.

PubMed

Cho, Kap-Chul; Shin, Gisoo

2014-06-01

Since 2006, the Korean Ministry of Education, Science and Technology, and the National Research Foundation of Korea have taken the lead in developing an institutional guideline for research ethics. The purpose was to identify the effectiveness of the Good Research Practice program, developed on a fund granted by the National Research Foundation of Korea, for nurses and nursing students whose knowledge and perception of research ethics were compared before and after the implementation of the Good Research Practice program. This study was conducted to compare the levels of knowledge and perception of research ethics in the participants before and after the program was implemented. The participants included 45 nurses and 69 nursing students from hospitals, colleges of nursing, and the Korean Nurses Association, located in Seoul, Korea. This study was approved by the Institutional Research Board in Korea. Based on the Analysis, Design, Development, Implementation, and Evaluation model, the Good Research Practice program was made up of a total of 30 h of the blended learning both online and off-line. The results of this study showed that there were statistically significant differences in both knowledge and perception of research ethics in nursing students and nurses before and after the program had been implemented. The concepts of professional nursing ethics, moral issues, and bioethics were often confused with one another and not clearly defined. Therefore, the concept and scope of bioethics, moral judgment, and overall nursing ethics should be well defined and conceptualized in the future. This study suggested integrating research ethics education in the nursing curriculum as a required course of study for nursing students and as part of the in-service training program for nurses in order to improve research ethics in nursing research in Korea. © The Author(s) 2013.

The practice setting: site of ethical conflict for some mothers and midwives.

PubMed

Thompson, Faye E

2003-11-01

Practitioners' ethical orientation and responses vary between practice settings. Yet, currently, the ethics for midwifery practice that is explicit in the literature and which provides the ideals of socialization into practice, is that of bio(medical)ethics. Traditional bioethics, developed because of World War II atrocities and increased scientific research, is based on moral philosophy, normative theory, abstract universal principles and objective problem solving, all of which focus on right and wrong 'action' for resolving dilemmas. They exclude context and relationship. Personal narratives of mothers and midwives contest the appropriateness of these accepted values and systems for childbirth because they induce conflict between workplace/service provider ethics and personal/professional midwifery ethics. In contrast to the disembedded and disembodied approach of biomedical ethics, an ethically adequate response in midwifery practice resonates more with the ethics of intimates, such as feminist virtue ethics.

The Ethics of Clinical Care and the Ethics of Clinical Research: Yin and Yang.

PubMed

Kowalski, Charles J; Hutchinson, Raymond J; Mrdjenovich, Adam J

2017-02-01

The Belmont Report's distinction between research and the practice of accepted therapy has led various authors to suggest that these purportedly distinct activities should be governed by different ethical principles. We consider some of the ethical consequences of attempts to separate the two and conclude that separation fails along ontological, ethical, and epistemological dimensions. Clinical practice and clinical research, as with yin and yang, can be thought of as complementary forces interacting to form a dynamic system in which the whole exceeds the sum of its parts. Just as effective clinical practice cannot exist without clinical research, meaningful clinical research requires the context of clinical practice. We defend this thesis by triangulation, that is, by outlining how multiple investigators have reached this conclusion on the basis of varied theoretical and applied approaches. More confidence can be placed in a result if different methods/viewpoints have led to that result. © The Author 2017. Published by Oxford University Press, on behalf of the Journal of Medicine and Philosophy Inc. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Research ethics and lessons from Hwanggate: what can we learn from the Korean cloning fraud?

PubMed

Saunders, R; Savulescu, J

2008-03-01

In this review of the Korean cloning scandal involving Woo-Suk Hwang, the nature of the disaster is documented and reasons why it occurred are suggested. The general problems it raises for scientific research are highlighted and six possible ways of improving practice are offered in the light of this case: (1) better education of science students; (2) independent monitoring and validation; (3) guidelines for tissue donation for research; (4) fostering of debate about ethically contentious research in science journals; (5) development of an international code of ethical research practice; (6) fostering of public involvement in ethical review and debate through the web.

The Ethics of Evaluation in Museums

ERIC Educational Resources Information Center

Heimlich, Joe E.

2015-01-01

Ethics in research and evaluation has a long standing history, one steeped with legal and moral implications. This article addresses the technicalities of ethics in evaluation as well as highlights the importance for museum educators to prioritize adopting such practices. While understanding the myriad of ethical concerns and best practices can be…

Deontological vs. Teleological Ethics--Some Remarks on the Impact of Ethics on Educational Practice.

ERIC Educational Resources Information Center

Ahrens, Jurgen

1989-01-01

Maintains that pedagogical practice must take into account the principles of moral philosophy. Claims that current pedagogical research on ethics is determined by the teleological and deontological paradigms associated with Aristotle and Kant respectively. Discusses these two paradigms and their relationship to educational practice. (RW)

ENHANCING RESEARCH ETHICS REVIEW SYSTEMS IN EGYPT: THE FOCUS OF AN INTERNATIONAL TRAINING PROGRAM INFORMED BY AN ECOLOGICAL DEVELOPMENTAL APPROACH TO ENHANCING RESEARCH ETHICS CAPACITY

PubMed Central

Edwards, Hillary Anne; Hifnawy, Tamer; Silverman, Henry

2014-01-01

Recently, training programs in research ethics have been established to enhance individual and institutional capacity in research ethics in the developing world. However, commentators have expressed concern that the efforts of these training programs have placed “too great an emphasis on guidelines and research ethics review”, which will have limited effect on ensuring ethical conduct in research. What is needed instead is a culture of ethical conduct supported by national and institutional commitment to ethical practices that are reinforced by upstream enabling conditions (strong civil society, public accountability, and trust in basic transactional processes), which are in turn influenced by developmental conditions (basic freedoms of political freedoms, economic facilities, social opportunities, transparency guarantees, and protective security). Examining this more inclusive understanding of the determinants of ethical conduct enhances at once both an appreciation of the limitations of current efforts of training programs in research ethics and an understanding of what additional training elements are needed to enable trainees to facilitate national and institutional policy changes that enhance research practices. We apply this developmental model to a training program focused in Egypt to describe examples of such additional training activities. PMID:24894063

Enhancing Research Ethics Review Systems in Egypt: The Focus of an International Training Program Informed by an Ecological Developmental Approach to Enhancing Research Ethics Capacity.

PubMed

Edwards, Hillary Anne; Hifnawy, Tamer; Silverman, Henry

2015-12-01

Recently, training programs in research ethics have been established to enhance individual and institutional capacity in research ethics in the developing world. However, commentators have expressed concern that the efforts of these training programs have placed 'too great an emphasis on guidelines and research ethics review', which will have limited effect on ensuring ethical conduct in research. What is needed instead is a culture of ethical conduct supported by national and institutional commitment to ethical practices that are reinforced by upstream enabling conditions (strong civil society, public accountability, and trust in basic transactional processes), which are in turn influenced by developmental conditions (basic freedoms of political freedoms, economic facilities, social opportunities, transparency guarantees, and protective security). Examining this more inclusive understanding of the determinants of ethical conduct enhances at once both an appreciation of the limitations of current efforts of training programs in research ethics and an understanding of what additional training elements are needed to enable trainees to facilitate national and institutional policy changes that enhance research practices. We apply this developmental model to a training program focused in Egypt to describe examples of such additional training activities. © 2014 John Wiley & Sons Ltd.

The call of the sirens: ethically navigating the sea of nonvalidated therapies.

PubMed

Grimmett, M R; Sulmasy, D P

1998-01-01

Medical research and innovation are vital to the advancement of medicine and, ultimately, benefit society and individual patients. However, the ethical principles of beneficence, respect for persons, and justice must guide the development and implementation of new practices. Ethical codes governing clinical practice and research already warn practitioners to avoid the use of nonvalidated practices outside of controlled clinical trials. Nonetheless, lack of compliance with these codes places many patients at risk for harm. Ophthalmologists, as well as all physicians, must recommit themselves to these ethical principles and codes and establish more vigorous peer-review methods to protect patients from nonvalidated practices that are implemented without a scientific basis.

Ethics in the minutiae: examining the role of the physical laboratory environment in ethical discourse.

PubMed

Bezuidenhout, Louise

2015-02-01

Responsibility within life science research is a highly scrutinised field. Increasingly, scientists are presented with a range of duties and expectations regarding their conduct within the research setting. In many cases, these duties are presented deontologically, forgoing extensive discussion on how these are practically implemented into the minutiae of daily research practices. This de-contextualized duty has proven problematic when it comes to practical issues of compliance, however it is not often considered as a fundamental aspect of building ethics discourse. This paper examines this issue in detail, particularly focusing on how differences in the contrasts between the ideal and real physical research environments cause conceptual problems for scientists and retard ethical engagement. Such issues are particularly pertinent in low- and middle-income countries. This paper combines theoretical and empirical analyses using the concept of "dual-use" as a focalizing topic. The data show that the research environment acts as an intimate component in the interpretation and implementation of ethical actions.

Ethical Issues in the Research of Group Work

ERIC Educational Resources Information Center

Goodrich, Kristopher M.; Luke, Melissa

2017-01-01

This article provides a primer for researchers exploring ethical issues in the research of group work. The article begins with an exploration of relevant ethical issues through the research process and current standards guiding its practice. Next, the authors identify resources that group work researchers can consult prior to constructing their…

Application of a Sensemaking Approach to Ethics Training in the Physical Sciences and Engineering

NASA Astrophysics Data System (ADS)

Kligyte, Vykinta; Marcy, Richard T.; Waples, Ethan P.; Sevier, Sydney T.; Godfrey, Elaine S.; Mumford, Michael D.; Hougen, Dean F.

2008-06-01

Integrity is a critical determinant of the effectiveness of research organizations in terms of producing high quality research and educating the new generation of scientists. A number of responsible conduct of research (RCR) training programs have been developed to address this growing organizational concern. However, in spite of a significant body of research in ethics training, it is still unknown which approach has the highest potential to enhance researchers' integrity. One of the approaches showing some promise in improving researchers' integrity has focused on the development of ethical decision-making skills. The current effort proposes a novel curriculum that focuses on broad metacognitive reasoning strategies researchers use when making sense of day-to-day social and professional practices that have ethical implications for the physical sciences and engineering. This sensemaking training has been implemented in a professional sample of scientists conducting research in electrical engineering, atmospheric and computer sciences at a large multi-cultural, multi-disciplinary, and multi-university research center. A pre-post design was used to assess training effectiveness using scenario-based ethical decision-making measures. The training resulted in enhanced ethical decision-making of researchers in relation to four ethical conduct areas, namely data management, study conduct, professional practices, and business practices. In addition, sensemaking training led to researchers' preference for decisions involving the application of the broad metacognitive reasoning strategies. Individual trainee and training characteristics were used to explain the study findings. Broad implications of the findings for ethics training development, implementation, and evaluation in the sciences are discussed.

Application of a sensemaking approach to ethics training in the physical sciences and engineering.

PubMed

Kligyte, Vykinta; Marcy, Richard T; Waples, Ethan P; Sevier, Sydney T; Godfrey, Elaine S; Mumford, Michael D; Hougen, Dean F

2008-06-01

Integrity is a critical determinant of the effectiveness of research organizations in terms of producing high quality research and educating the new generation of scientists. A number of responsible conduct of research (RCR) training programs have been developed to address this growing organizational concern. However, in spite of a significant body of research in ethics training, it is still unknown which approach has the highest potential to enhance researchers' integrity. One of the approaches showing some promise in improving researchers' integrity has focused on the development of ethical decision-making skills. The current effort proposes a novel curriculum that focuses on broad metacognitive reasoning strategies researchers use when making sense of day-to-day social and professional practices that have ethical implications for the physical sciences and engineering. This sensemaking training has been implemented in a professional sample of scientists conducting research in electrical engineering, atmospheric and computer sciences at a large multi-cultural, multi-disciplinary, and multi-university research center. A pre-post design was used to assess training effectiveness using scenario-based ethical decision-making measures. The training resulted in enhanced ethical decision-making of researchers in relation to four ethical conduct areas, namely data management, study conduct, professional practices, and business practices. In addition, sensemaking training led to researchers' preference for decisions involving the application of the broad metacognitive reasoning strategies. Individual trainee and training characteristics were used to explain the study findings. Broad implications of the findings for ethics training development, implementation, and evaluation in the sciences are discussed.

Researching Lesbian, Gay, and Bisexual Youth: Conceptual, Practical, and Ethical Considerations

ERIC Educational Resources Information Center

D'Augelli, Anthony R.; Grossman, Arnold H.

2006-01-01

Developmental and educational researchers have overlooked the development of sexual orientation among adolescents and youth, even as they study sexual development and identity development during adolescence. This paper examines some conceptual, practical, and ethical considerations involved in conducting research on lesbian, gay, and bisexual…

South African Research Ethics Committee Review of Standards of Prevention in HIV Vaccine Trial Protocols.

PubMed

Essack, Zaynab; Wassenaar, Douglas R

2018-04-01

HIV prevention trials provide a prevention package to participants to help prevent HIV acquisition. As new prevention methods are proven effective, this raises ethical and scientific design complexities regarding the prevention package or standard of prevention. Given its high HIV incidence and prevalence, South Africa has become a hub for HIV prevention research. For this reason, it is critical to study the implementation of relevant ethical-legal frameworks for such research in South Africa. This qualitative study used in-depth interviews to explore the practices and perspectives of eight members of South African research ethics committees (RECs) who have reviewed protocols for HIV vaccine trials. Their practices and perspectives are compared with ethics guideline requirements for standards of prevention.

Everyday Ethics: Reflections on Practice

ERIC Educational Resources Information Center

Rossman, Gretchen B.; Rallis, Sharon F.

2010-01-01

This introductory article frames the contributions for this issue on everyday ethics--moments that demand moral considerations and ethical choices that researchers encounter. We discuss concerns raised within the research community about the tendency to observe merely obligatory ethical procedures as outlined in Human Subjects Review regulations.…

Still Human: A Call for Increased Focus on Ethical Standards in Cadaver Research.

PubMed

Bach, Michelle C

2016-12-01

Research on human cadavers is an important mechanism of scientific progress and comprises a large industry in the United States. However, despite its importance and influence, there is little ethical or regulatory oversight of cadaver-based research. This lack of transparency raises important ethical questions. Thus, this paper serves as a call for ethicists and regulators to pay increased attention to cadaver research. I argue that cadaver research ought to be considered a subset of human subjects research and held accountable to higher ethical standards. After describing current practices, I argue that oversight of cadaver research as a form of human subjects research is appropriate because cadaver research is similar to other types of human research, participants in cadaver research incur risks of harm, and a current lack of oversight has allowed the cadaver industry to entice research participation through ethically questionable practices. This paper urges greater dialogue among human subjects research ethicists and regulators about what constitutes appropriate protections for participants in cadaver research.

Research ethics in the context of humanitarian emergencies.

PubMed

O'Mathúna, Dónal

2015-02-01

Research is needed to make responses to disasters and humanitarian emergencies more evidence-based. Such research must also adhere to the generally accepted principles of research ethics. While research into health interventions used in disasters raises distinctive ethical concerns, seven ethical principles developed for clinical research are applied here to disaster research. Practical examples from disaster settings are used to demonstrate how these ethical principles can be applied. This reveals that research ethics needs to be seen as much more than a mechanism to obtain ethical approval for research. Research ethics involves ethical principles and governance frameworks, but must also consider the role of ethical virtues in research. Virtues are essential to ensure that researchers do what they believe is ethically right and resist what is unethical. Research ethics that truly protects participants and promotes respect needs to include training in ethical virtues to ensure disaster research is carried out to the highest ethical standards. This article is based on a presentation at the Evidence Aid Symposium on 20 September 2014, in Hyderabad, India. © 2015 Chinese Cochrane Center, West China Hospital of Sichuan University and Wiley Publishing Asia Pty Ltd.

Ethics, Ricoeur And Philosophy: Ethical Teacher Workshops

ERIC Educational Resources Information Center

Scott-Baumann, Alison

2006-01-01

This work is about the ethics of education, and about philosophy as a discipline that can help us to help children look at ethics afresh. The study and practice of ethics is about morals and uncertainties and, as such, poses problems for the research community. The philosopher Ricoeur challenges research as only one way to find meaning in the…

The ethics curriculum for doctor of nursing practice programs.

PubMed

Peirce, Anne Griswold; Smith, Jennifer A

2008-01-01

Ethical questions dealt with by nurses who have Doctor of Nursing Practice (DNP) degrees include traditional bioethical questions, but also business and legal ethics. Doctorally prepared nurses are increasingly in positions to make ethical decisions rather than to respond to decisions made by others. The traditional master's-degree advanced practice nursing curriculum does not address the extended expertise and decision-making skills needed by DNP practitioners as they face these new types of ethical dilemmas. We propose that a curricular framework that addresses clinical, research, business, and legal ethics is needed by all DNP students.

Payment of research participants: current practice and policies of Irish research ethics committees.

PubMed

Roche, Eric; King, Romaine; Mohan, Helen M; Gavin, Blanaid; McNicholas, Fiona

2013-09-01

Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking. Our aim was to examine REC policies, experiences and concerns with respect to the payment of participants in research projects in Ireland. Postal survey of all RECs in Ireland. Response rate was 62.5% (n=50). 80% of RECs reported not to have any established policy on the payment of research subjects while 20% had refused ethics approval to studies because the investigators proposed to pay research participants. The most commonly cited concerns were the potential for inducement and undermining of voluntary consent. There is considerable variability among RECs on the payment of research participants and a lack of clear consensus guidelines on the subject. The development of standardised guidelines on the payment of research subjects may enhance recruitment of research participants.

Human research ethics committees: examining their roles and practices.

PubMed

Guillemin, Marilys; Gillam, Lynn; Rosenthal, Doreen; Bolitho, Annie

2012-07-01

Considerable time and resources are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institution's interests, as well as being overprotective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.

Educating nurses about research ethics and practices with a self-directed practice-based learning program.

PubMed

Cibulka, Nancy J

2011-11-01

Learner-driven and practice-based education programs are recommended for integration of learning. A continuing education program on research ethics was introduced to five nurses in an ambulatory care setting at a Magnet® hospital, using a commercially available web-based course followed by a research practicum. The seasoned nurses reported little previous education in this area. Working with a nurse researcher, three nurses participated in a research project for improving clinic care delivery. The success of the continuing education program was determined by knowledge acquisition, satisfaction with learning activities, and perceived confidence in research participation. This continuing education program was effective in providing for knowledge and skill development in research ethics. The integrative learning format was well received. Copyright 2011, SLACK Incorporated.

Researcher Tales and Research Ethics: The Spaces in Which We Find Ourselves

ERIC Educational Resources Information Center

White, Julie; Fitzgerald, Tanya

2010-01-01

The tales we tell here focus on the ethical issues arising from our research practice with vulnerable young participants and those for whom research has been inextricably linked with European imperialism and colonialism. The importance of relational obligations, temporality and potential for a continuing narrative approach to ethical research…

Nursing students' experiences of ethical issues in clinical practice: A New Zealand study.

PubMed

Sinclair, J; Papps, E; Marshall, B

2016-03-01

Nursing students experience ethical problems in clinical practice in a different way from registered nurses. In order to develop ethical reasoning and competence in nursing students, nurse educators must recognise the unique issues students face. This research described the occurrence of ethical issues in clinical practice for 373 undergraduate nursing students who responded to a national questionnaire investigating the frequency of pre-determined ethical issues and the corresponding level of distress. Over two thirds of respondents experienced breaches of a patient's right to confidentiality, privacy, dignity or respect and 87% experienced unsafe working conditions. The most distressing issues were those that compromised patient safety, including unsafe healthcare practices, working conditions and suspected abuse or neglect. Themes that emerged from an open-ended question included lack of support and supervision, bullying and end of life issues. This research found the frequency at which ethical issues are experienced was highest in year three participants. However, the overall distress levels were lower for the majority of issues for those participants in the later part of their degree. Recommendations from this research include developing ethics education around the main concerns that students face in order to enhance students' understanding, resilience and ability to respond appropriately. Copyright © 2016 Elsevier Ltd. All rights reserved.

Brief report.

PubMed

Colnerud, Gunnel

2013-10-01

Most accounts of the ethical problems facing researchers across a broad spectrum of research fields come from ethicists, ethics committees, and specialists committed to the study of ethics in human research. In contrast, this study reports on the ethical questions that researchers, themselves, report facing in their everyday practice. Fifty-five Swedish researchers contributed 109 examples of ethical dilemmas, conflicts, and problems in research. They were all researchers at the postdoctoral level in the fields of medicine, the humanities, education, and the social sciences, who devoted at least 50 percent of their working hours to research. They reported issues they face before, during, and after gathering data. Their range of issues is broader than generally discussed and points to the importance of researchers' ethical sensitivity.

Best practice & research in anaesthesiology issue on new approaches in clinical research ethics in clinical research.

PubMed

Schwenzer, Karen J

2011-12-01

The history of ethics in clinical research parallels the history of abuse of human beings. The Nuremberg Code, Declaration of Helsinki, and the Belmont Report laid the foundations for modern research ethics. In the United States, the OHRP and the FDA provide guidelines for the ethical conduct of research. Investigators should be familiar with regulations concerning informed consent, doing research in vulnerable populations, and protection of privacy. Copyright © 2011 Elsevier Ltd. All rights reserved.

Introducing survival ethics into engineering education and practice.

PubMed

Verharen, C; Tharakan, J; Middendorf, G; Castro-Sitiriche, M; Kadoda, G

2013-06-01

Given the possibilities of synthetic biology, weapons of mass destruction and global climate change, humans may achieve the capacity globally to alter life. This crisis calls for an ethics that furnishes effective motives to take global action necessary for survival. We propose a research program for understanding why ethical principles change across time and culture. We also propose provisional motives and methods for reaching global consensus on engineering field ethics. Current interdisciplinary research in ethics, psychology, neuroscience and evolutionary theory grounds these proposals. Experimental ethics, the application of scientific principles to ethical studies, provides a model for developing policies to advance solutions. A growing literature proposes evolutionary explanations for moral development. Connecting these approaches necessitates an experimental or scientific ethics that deliberately examines theories of morality for reliability. To illustrate how such an approach works, we cover three areas. The first section analyzes cross-cultural ethical systems in light of evolutionary theory. While such research is in its early stages, its assumptions entail consequences for engineering education. The second section discusses Howard University and University of Puerto Rico/Mayagüez (UPRM) courses that bring ethicists together with scientists and engineers to unite ethical theory and practice. We include a syllabus for engineering and STEM (Science, Technology, Engineering and Mathematics) ethics courses and a checklist model for translating educational theory and practice into community action. The model is based on aviation, medicine and engineering practice. The third and concluding section illustrates Howard University and UPRM efforts to translate engineering educational theory into community action. Multidisciplinary teams of engineering students and instructors take their expertise from the classroom to global communities to examine further the ethicality of prospective technologies and the decision-making processes that lead to them.

The Ethics of Writing Instruction: Issues in Theory and Practice. Perspectives on Writing: Theory, Research, Practice. Volume 4.

ERIC Educational Resources Information Center

Pemberton, Michael A., Ed.

This collection of essays reveals a keen awareness of the degree to which ethics and ethical systems are located in particular instructional contexts. The essays consider the implications of these contexts from a variety of perspectives, both theoretical and pedagogical. In the collection's first part, Ethics and the Composition Classroom, are the…

A syllabus for research ethics committees: training needs and resources in different European countries.

PubMed

Cairoli, Ester; Davies, Hugh T; Helm, Jürgen; Hook, Georg; Knupfer, Petra; Wells, Frank

2012-03-01

This paper reports a European Forum for Good Clinical Practice workshop held in 2011 to consider a research ethics committee training syllabus, subsequent training needs and resources. The syllabus that was developed was divided into four competencies: committee working; scientific method; ethical analysis and the regulatory framework. Appropriate training needs for each, with possible resources, were discussed. Lack of funding for training was reported as a major problem but affordable alternatives were debated. Strengths and weaknesses of this approach were discussed and the resultant proposal will be disseminated through the European Forum for Good Clinical Practice and the research ethics committees of member states.

Raising Awareness of Research Ethics in SoTL: The Role of Educational Developers

ERIC Educational Resources Information Center

Stockley, Denise; Balkwill, Laura-Lee

2013-01-01

Does the subject of research ethics take you by surprise? Does it make you somewhat uncomfortable? Does it seem to have nothing to do with your research or your practice? These are the attitudes we have encountered about research ethics among some SoTL researchers at workshops and conferences. In many cases, these researchers had conducted…

Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya.

PubMed

Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy

2016-12-01

There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential 'solutions' to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.

Ethics, Governance, Research and Enterprise

ERIC Educational Resources Information Center

Lategan, Laetus; Hooper, Peter

2009-01-01

The focus of this paper is to reflect on research ethics practices at universities and particularly on the additional considerations needed as "enterprise" becomes a key driver across the sector internationally. The outcome of the paper is to identify suitable guidelines for dealing with the management of research ethics in this changing…

Ethical dilemmas experienced by speech-language pathologists working in private practice.

PubMed

Flatley, Danielle R; Kenny, Belinda J; Lincoln, Michelle A

2014-06-01

Speech-language pathologists experience ethical dilemmas as they fulfil their professional roles and responsibilities. Previous research findings indicated that speech-language pathologists working in publicly funded settings identified ethical dilemmas when they managed complex clients, negotiated professional relationships, and addressed service delivery issues. However, little is known about ethical dilemmas experienced by speech-language pathologists working in private practice settings. The aim of this qualitative study was to describe the nature of ethical dilemmas experienced by speech-language pathologists working in private practice. Data were collected through semi-structured interviews with 10 speech-language pathologists employed in diverse private practice settings. Participants explained the nature of ethical dilemmas they experienced at work and identified their most challenging and frequently occurring ethical conflicts. Qualitative content analysis was used to analyse transcribed data and generate themes. Four themes reflected the nature of speech-language pathologists' ethical dilemmas; balancing benefit and harm, fidelity of business practices, distributing funds, and personal and professional integrity. Findings support the need for professional development activities that are specifically targeted towards facilitating ethical practice for speech-language pathologists in the private sector.

The practice of nursing research: getting ready for 'ethics' and the matter of character.

PubMed

Sellman, Derek

2016-03-01

Few would argue with the idea that nursing research should be conducted ethically yet obtaining ethical approval is considered by many to have become unnecessarily burdensome. This brief article investigates the idea that there might be a relationship between the level of perceived burdensomeness of the research ethics application process on the one hand and the character of the nurse-researcher on the other. Given that nurses are required to be other-regarding, a nurse who undertakes research primarily for self-regarding reasons would seem to be acting in ways inconsistent with the aims of nursing as set out in nursing codes. It is suggested that the self-regarding nurse-researcher may find the ethics application process more burdensome than the other-regarding nurse-researcher who, it is further suggested, is engaged with nursing research as a practice in the technical sense in which that term has been developed by the philosopher Alasdair MacIntyre. © 2015 John Wiley & Sons Ltd.

[Medical research-ethics applied to social sciences: relevance, limits, issues and necessary adjustments].

PubMed

Desclaux, A

2008-04-01

Social sciences are concretely concerned by the ethics of medical research when they deal with topics related to health, since they are subjected to clearance procedures specific to this field. This raises at least three questions: - Are principles and practices of medical research ethics and social science research compatible? - Are "research subjects" protected by medical research ethics when they participate in social science research projects? - What can social sciences provide to on-going debates and reflexion in this field? The analysis of the comments coming from ethics committees about social science research projects, and of the experience of implementation of these projects, shows that the application of international ethics standards by institutional review boards or ethics committees raises many problems in particular for researches in ethnology anthropology and sociology. These problems may produce an impoverishment of research, pervert its meaning, even hinder any research. They are not only related to different norms, but also to epistemological divergences. Moreover, in the case of studies in social sciences, the immediate and differed risks, the costs, as well as the benefits for subjects, are very different from those related to medical research. These considerations are presently a matter of debates in several countries such as Canada, Brasil, and USA. From another hand, ethics committees seem to have developed without resorting in any manner to the reflexion carried out within social sciences and more particularly in anthropology Still, the stakes of the ethical debates in anthropology show that many important and relevant issues have been discussed. Considering this debate would provide openings for the reflexion in ethics of health research. Ethnographic studies of medical research ethics principles and practices in various sociocultural contexts may also contribute to the advancement of medical ethics. A "mutual adjustment" between ethics of medical research and social sciences is presently necessary: it raises new questions open for debate.

A Research Agenda for Humanitarian Health Ethics

PubMed Central

Hunt, Matthew; Schwartz, Lisa; Pringle, John; Boulanger, Renaud; Nouvet, Elysée; O'Mathúna, Dónal; Arya, Neil; Bernard, Carrie; Beukeboom, Carolyn; Calain, Philippe; de Laat, Sonya; Eckenwiler, Lisa; Elit, Laurie; Fraser, Veronique; Gillespie, Leigh-Anne; Johnson, Kirsten; Meagher, Rachel; Nixon, Stephanie; Olivier, Catherine; Pakes, Barry; Redwood-Campbell, Lynda; Reis, Andreas; Renaldi, Teuku; Singh, Jerome; Smith, Maxwell; Von Schreeb, Johan

2014-01-01

This paper maps key research questions for humanitarian health ethics: the ethical dimensions of healthcare provision and public health activities during international responses to situations of humanitarian crisis. Development of this research agenda was initiated at the Humanitarian Health Ethics Forum (HHE Forum) convened in Hamilton, Canada in November 2012. The HHE Forum identified priority avenues for advancing policy and practice for ethics in humanitarian health action. The main topic areas examined were: experiences and perceptions of humanitarian health ethics; training and professional development initiatives for humanitarian health ethics; ethics support for humanitarian health workers; impact of policies and project structures on humanitarian health ethics; and theoretical frameworks and ethics lenses. Key research questions for each topic area are presented, as well as proposed strategies for advancing this research agenda. Pursuing the research agenda will help strengthen the ethical foundations of humanitarian health action. PMID:25687273

Reporting transparency: making the ethical mandate explicit.

PubMed

Nicholls, Stuart G; Langan, Sinéad M; Benchimol, Eric I; Moher, David

2016-03-16

Improving the transparency and quality of reporting in biomedical research is considered ethically important; yet, this is often based on practical reasons such as the facilitation of peer review. Surprisingly, there has been little explicit discussion regarding the ethical obligations that underpin reporting guidelines. In this commentary, we suggest a number of ethical drivers for the improved reporting of research. These ethical drivers relate to researcher integrity as well as to the benefits derived from improved reporting such as the fair use of resources, minimizing risk of harms, and maximizing benefits. Despite their undoubted benefit to reporting completeness, questions remain regarding the extent to which reporting guidelines can influence processes beyond publication, including researcher integrity or the uptake of scientific research findings into policy or practice. Thus, we consider investigation on the effects of reporting guidelines an important step in providing evidence of their benefits.

Structured Ethical Reflection in Practitioner Inquiry: Theory, Pedagogy, and Practice

ERIC Educational Resources Information Center

Stevens, Douglas M.; Brydon-Miller, Mary; Raider-Roth, Miriam

2016-01-01

Practitioner inquiry provides a powerful tool for improving practice and addressing critical issues in classrooms, schools, and broader communities. However, it also raises unique ethical challenges that often go unrecognized and unresolved. Structured Ethical Reflection (SER) provides teacher researchers with a process for identifying core values…

RELIGIOUS, SPIRITUAL, AND TRADITIONAL BELIEFS AND PRACTICES AND THE ETHICS OF MENTAL HEALTH RESEARCH IN LESS WEALTHY COUNTRIES*

PubMed Central

NOLAN, JENNIFER A.; WHETTEN, KATHRYN; KOENIG, HAROLD G.

2013-01-01

This discussion article contributes to ethics reform by introducing the contribution of religious, spiritual, and traditional beliefs and practices to both subject vulnerability and patient improvement. A growing body of evidence suggests that religious, spiritual, and traditional beliefs and practices may provide positive benefits, although in some cases mixed or negative consequences to mental and physical health. These beliefs and practices add a new level of complexity to ethical deliberations, in terms of what ignoring them may mean for both distributive justice and respect for persons. International ethical guidelines need to be created that are expansive enough to cover an array of social groups and circumstances. It is proposed that these guidelines incorporate the religious, spiritual, and/or traditional principles that characterize a local population. Providing effective mental healthcare requires respecting and understanding how differences, including ones that express a population's religious, spiritual, or traditional belief systems, play into the complex deliberations and negotiations that must be undertaken if researchers are to adhere to ethical imperatives in research and treatment. PMID:22439296

Current Practice in Research Ethics: Global Trends and New Opportunities for African Universities. Research and Innovation Policy Series. Number 1

ERIC Educational Resources Information Center

Roberts, Liam

2007-01-01

Research Ethics has emerged as one of the most well-developed policy areas within the sphere of Research and Innovation Management. As such, for African institutions looking to strengthen their policy frameworks, develop increased collaborations, and increase research outputs, a thorough understanding of global trends in Ethics will be vital.…

Empirical research in medical ethics: how conceptual accounts on normative-empirical collaboration may improve research practice.

PubMed

Salloch, Sabine; Schildmann, Jan; Vollmann, Jochen

2012-04-13

The methodology of medical ethics during the last few decades has shifted from a predominant use of normative-philosophical analyses to an increasing involvement of empirical methods. The articles which have been published in the course of this so-called 'empirical turn' can be divided into conceptual accounts of empirical-normative collaboration and studies which use socio-empirical methods to investigate ethically relevant issues in concrete social contexts. A considered reference to normative research questions can be expected from good quality empirical research in medical ethics. However, a significant proportion of empirical studies currently published in medical ethics lacks such linkage between the empirical research and the normative analysis. In the first part of this paper, we will outline two typical shortcomings of empirical studies in medical ethics with regard to a link between normative questions and empirical data: (1) The complete lack of normative analysis, and (2) cryptonormativity and a missing account with regard to the relationship between 'is' and 'ought' statements. Subsequently, two selected concepts of empirical-normative collaboration will be presented and how these concepts may contribute to improve the linkage between normative and empirical aspects of empirical research in medical ethics will be demonstrated. Based on our analysis, as well as our own practical experience with empirical research in medical ethics, we conclude with a sketch of concrete suggestions for the conduct of empirical research in medical ethics. High quality empirical research in medical ethics is in need of a considered reference to normative analysis. In this paper, we demonstrate how conceptual approaches of empirical-normative collaboration can enhance empirical research in medical ethics with regard to the link between empirical research and normative analysis.

Empirical research in medical ethics: How conceptual accounts on normative-empirical collaboration may improve research practice

PubMed Central

2012-01-01

Background The methodology of medical ethics during the last few decades has shifted from a predominant use of normative-philosophical analyses to an increasing involvement of empirical methods. The articles which have been published in the course of this so-called 'empirical turn' can be divided into conceptual accounts of empirical-normative collaboration and studies which use socio-empirical methods to investigate ethically relevant issues in concrete social contexts. Discussion A considered reference to normative research questions can be expected from good quality empirical research in medical ethics. However, a significant proportion of empirical studies currently published in medical ethics lacks such linkage between the empirical research and the normative analysis. In the first part of this paper, we will outline two typical shortcomings of empirical studies in medical ethics with regard to a link between normative questions and empirical data: (1) The complete lack of normative analysis, and (2) cryptonormativity and a missing account with regard to the relationship between 'is' and 'ought' statements. Subsequently, two selected concepts of empirical-normative collaboration will be presented and how these concepts may contribute to improve the linkage between normative and empirical aspects of empirical research in medical ethics will be demonstrated. Based on our analysis, as well as our own practical experience with empirical research in medical ethics, we conclude with a sketch of concrete suggestions for the conduct of empirical research in medical ethics. Summary High quality empirical research in medical ethics is in need of a considered reference to normative analysis. In this paper, we demonstrate how conceptual approaches of empirical-normative collaboration can enhance empirical research in medical ethics with regard to the link between empirical research and normative analysis. PMID:22500496

The fiduciary obligation of the physician-researcher in phase IV trials

PubMed Central

2014-01-01

Background In this manuscript, we argue that within the context of phase IV, physician-researchers retain their fiduciary obligation to treat the patient-participants. Discussion We first clarify why the perspective that research ethics ought to be differentiated from clinical ethics is not applicable in phase IV, and therefore, why therapeutic orientation is most convivial in this phase. Next, assuming that ethics guidelines may be representative of common morality, we show that ethics guidelines see physician-researchers primarily as physicians and only secondarily as researchers. We then elaborate on what a fiduciary obligation is and how some of the obligations are default duties. Lastly, we look at the fiduciary obligation of the physician-researcher in phase IV interventional trials. Conclusion The fiduciary obligation to treat is not as easily waived as in earlier trials. Assuming the entwinement of research and practice in phase IV, physician-researchers, in collaboration with other researchers, investigators, and research ethics committees, should ensure that in terms of study design, methodology, and research practice, the therapeutic value of the research to the patient-participants is not diminished. PMID:24507449

How do we know that research ethics committees are really working? The neglected role of outcomes assessment in research ethics review

PubMed Central

Coleman, Carl H; Bouësseau, Marie-Charlotte

2008-01-01

Background Countries are increasingly devoting significant resources to creating or strengthening research ethics committees, but there has been insufficient attention to assessing whether these committees are actually improving the protection of human research participants. Discussion Research ethics committees face numerous obstacles to achieving their goal of improving research participant protection. These include the inherently amorphous nature of ethics review, the tendency of regulatory systems to encourage a focus on form over substance, financial and resource constraints, and conflicts of interest. Auditing and accreditation programs can improve the quality of ethics review by encouraging the development of standardized policies and procedures, promoting a common base of knowledge, and enhancing the status of research ethics committees within their own institutions. However, these mechanisms focus largely on questions of structure and process and are therefore incapable of answering many critical questions about ethics committees' actual impact on research practices. The first step in determining whether research ethics committees are achieving their intended function is to identify what prospective research participants and their communities hope to get out of the ethics review process. Answers to this question can help guide the development of effective outcomes assessment measures. It is also important to determine whether research ethics committees' guidance to investigators is actually being followed. Finally, the information developed through outcomes assessment must be disseminated to key decision-makers and incorporated into practice. This article offers concrete suggestions for achieving these goals. Conclusion Outcomes assessment of research ethics committees should address the following questions: First, does research ethics committee review improve participants' understanding of the risks and potential benefits of studies? Second, does the process affect prospective participants' decisions about whether to participate in research? Third, does it change participants' subjective experiences in studies or their attitudes about research? Fourth, does it reduce the riskiness of research? Fifth, does it result in more research responsive to the local community's self-identified needs? Sixth, is research ethics committees' guidance to researchers actually being followed? PMID:18373857

What Do Ethical Guidelines for Epidemiology Say About an Ethics Review? A Qualitative Systematic Review.

PubMed

Piasecki, Jan; Waligora, Marcin; Dranseika, Vilius

2017-06-01

Epidemiological research is subject to an ethics review. The aim of this qualitative review is to compare existing ethical guidelines in English for epidemiological research and public health practice in regard to the scope and matter of an ethics review. Authors systematically searched PubMed, Google Scholar and Google Search for ethical guidelines. Qualitative analysis (constant comparative method) was applied to categorize important aspects of the an ethics review process. Eight ethical guidelines in English for epidemiological research were retrieved. Five main categories that are relevant to the review of epidemiological research by Institutional Review Boards/Research Ethics Committees were distinguished. Within the scope of main categories, fifty-nine subcategories were analyzed. There are important differences between the guidelines in terms of the scope and matter of an ethics review. Not all guidelines encompass all identified ethically important issues, and some do not define precisely the scope and matter of an ethics review, leaving much to the ethics of the individual researchers and the discretion of IRBs/RECs.

A blended-learning programme regarding professional ethics in physiotherapy students.

PubMed

Aguilar-Rodríguez, Marta; Marques-Sule, Elena; Serra-Añó, Pilar; Espí-López, Gemma Victoria; Dueñas-Moscardó, Lirios; Pérez-Alenda, Sofía

2018-01-01

In the university context, assessing students' attitude, knowledge and opinions when applying an innovative methodological approach to teach professional ethics becomes fundamental to know if the used approach is enough motivating for students. To assess the effect of a blended-learning model, based on professional ethics and related to clinical practices, on physiotherapy students' attitude, knowledge and opinions towards learning professional ethics. Research design and participants: A simple-blind clinical trial was performed (NLM identifier NCT03241693) (control group, n = 64; experimental group, n = 65). Both groups followed clinical practices for 8 months. Control group performed a public exposition of a clinical case about professional ethics. By contrast, an 8-month blended-learning programme regarding professional ethics was worked out for experimental group. An online syllabus and online activities were elaborated, while face-to-face active participation techniques were performed to discuss ethical issues. Students' attitudes, knowledge and opinions towards learning professional ethics were assessed. Ethical considerations: The study was approved by the University Ethic Committee of Human Research and followed the ethical principles according to the Declaration of Helsinki. After the programme, attitudes and knowledge towards learning professional ethics of experimental group students significantly improved, while no differences were observed in control group. Moreover, opinions reported an adequate extension of themes and temporization, importance of clinical practices and interest of topics. Case study method and role playing were considered as the most helpful techniques. The blended-learning programme proposed, based on professional ethics and related to clinical practices, improves physiotherapy students' attitudes, knowledge and opinions towards learning professional ethics.

Enabling Ethical Code Embeddedness in Construction Organizations: A Review of Process Assessment Approach.

PubMed

Oladinrin, Olugbenga Timo; Ho, Christabel Man-Fong

2016-08-01

Several researchers have identified codes of ethics (CoEs) as tools that stimulate positive ethical behavior by shaping the organisational decision-making process, but few have considered the information needed for code implementation. Beyond being a legal and moral responsibility, ethical behavior needs to become an organisational priority, which requires an alignment process that integrates employee behavior with the organisation's ethical standards. This paper discusses processes for the responsible implementation of CoEs based on an extensive review of the literature. The internationally recognized European Foundation for Quality Management Excellence Model (EFQM model) is proposed as a suitable framework for assessing an organisation's ethical performance, including CoE embeddedness. The findings presented herein have both practical and research implications. They will encourage construction practitioners to shift their attention from ethical policies to possible enablers of CoE implementation and serve as a foundation for further research on ethical performance evaluation using the EFQM model. This is the first paper to discuss the model's use in the context of ethics in construction practice.

Procedure versus process: ethical paradigms and the conduct of qualitative research.

PubMed

Pollock, Kristian

2012-09-27

Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic 'procedural' resolution. This is not to say that qualitative studies are 'unethical' but that their ethical nature can only be safeguarded through the practice of 'micro-ethics' based on the judgement and integrity of researchers in the field. This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of 'empirical ethics' as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values.

Ethics of clinical trials in Nigeria.

PubMed

Okonta, Patrick I

2014-05-01

The conduct of clinical trials for the development and licensing of drugs is a very important aspect of healthcare. Drug research, development and promotion have grown to a multi-billion dollar global business. Like all areas of human endeavour involving generation and control of huge financial resources, it could be subject to deviant behaviour, sharp business practices and unethical practices. The main objective of this review is to highlight potential ethical challenges in the conduct of clinical trials in Nigeria and outline ways in which these can be avoided. Current international and national regulatory and ethical guidelines are reviewed to illustrate the requirements for ethical conduct of clinical trials. Past experiences of unethical conduct of clinical trials especially in developing countries along with the increasing globalisation of research makes it imperative that all players should be aware of the ethical challenges in clinical trials and the benchmarks for ethical conduct of clinical research in Nigeria.

Ethics of clinical trials in Nigeria

PubMed Central

Okonta, Patrick I.

2014-01-01

The conduct of clinical trials for the development and licensing of drugs is a very important aspect of healthcare. Drug research, development and promotion have grown to a multi-billion dollar global business. Like all areas of human endeavour involving generation and control of huge financial resources, it could be subject to deviant behaviour, sharp business practices and unethical practices. The main objective of this review is to highlight potential ethical challenges in the conduct of clinical trials in Nigeria and outline ways in which these can be avoided. Current international and national regulatory and ethical guidelines are reviewed to illustrate the requirements for ethical conduct of clinical trials. Past experiences of unethical conduct of clinical trials especially in developing countries along with the increasing globalisation of research makes it imperative that all players should be aware of the ethical challenges in clinical trials and the benchmarks for ethical conduct of clinical research in Nigeria. PMID:25013247

Ethical Issues and Practical Challenges in Suicide Research.

PubMed

Hom, Melanie A; Podlogar, Matthew C; Stanley, Ian H; Joiner, Thomas E

2017-03-01

Research with human subjects represents a critical avenue for suicide prevention efforts; however, such research is not without its ethical and practical challenges. Specifically, given the nature of research with individuals at elevated risk for suicide (e.g., increased concerns regarding participant safety, adverse events, liability, difficulties often arise during the institutional review board (IRB) evaluation and approval process. This paper aims to discuss IRB-related issues associated with suicide prevention research, including researcher and IRB panel member responsibilities, suicide risk assessment and management ethics and procedures, informed consent considerations, preparation of study protocols, and education and training. Points to consider and components to potentially include in an IRB application for suicide-related research are additionally provided. Literature relevant to ethics in suicide research and suicide risk assessment and management was reviewed and synthesized. Suicide research can be conducted in accordance with ethical principles while also furthering the science of suicide prevention. Despite the challenging nature of suicide prevention research, empirically informed solutions exist to address difficulties that may emerge in interfacing with IRBs. There remain areas for improvement in the IRB approval process that warrant further investigation and work.

Assessment of children's capacity to consent for research: a descriptive qualitative study of researchers' practices.

PubMed

Gibson, Barbara E; Stasiulis, Elaine; Gutfreund, Shawna; McDonald, Maria; Dade, Lauren

2011-08-01

In Canadian jurisdictions without specific legislation pertaining to research consent, the onus is placed on researchers to determine whether a child is capable of independently consenting to participate in a research study. Little, however, is known about how child health researchers are approaching consent and capacity assessment in practice. The aim of this study was to explore and describe researchers' current practices. The study used a qualitative descriptive design consisting of 14 face-to-face interviews with child health researchers and research assistants in Southern Ontario. Transcribed interviews were analysed for common themes. Procedures for assessing capacity varied considerably from the use of age cutoffs to in-depth engagement with each child. Three key issues emerged from the accounts: (1) requirements that consent be provided by a single person thwarted researchers' abilities to support family decision-making; (2) little practical distinction was made between assessing if a child was capable, versus determining if study information had been adequately explained by the researcher; and (3) participants' perceived that review boards' requirements may conflict with what they considered ethical consent practices. The results suggest that researchers' consent and capacity knowledge and skills vary considerably. Perceived discrepancies between ethical practice and ethics boards' requirements suggest the need for dialogue, education and possibly ethics board reforms. Furthermore we propose, where appropriate, a 'family decision-making' model that allows parents and their children to consent together, thereby shifting the focus from separate assent and consent procedures to approaches that appropriately engage the child and family.

Ethics and professionalism in medical physics: a survey of AAPM members.

PubMed

Ozturk, Naim; Armato, Samuel G; Giger, Maryellen L; Serago, Christopher F; Ross, Lainie F

2013-04-01

To assess current education, practices, attitudes, and perceptions pertaining to ethics and professionalism in medical physics. A link to a web-based survey was distributed to the American Association of Physicists in Medicine (AAPM) e-mail membership list, with a follow-up e-mail sent two weeks later. The survey included questions about ethics/professionalism education, direct personal knowledge of ethically questionable practices in clinical care, research, education (teaching and mentoring), and professionalism, respondents' assessment of their ability to address ethical/professional dilemmas, and demographics. For analysis, reports of unethical or ethically questionable practices or behaviors by approximately 40% or more of respondents were classified as "frequent." Partial or complete responses were received from 18% (1394/7708) of AAPM members. Overall, 60% (827/1377) of the respondents stated that they had not received ethics/professionalism education during their medical physics training. Respondents currently in training were more likely to state that they received instruction in ethics/professionalism (80%, 127/159) versus respondents who were post-training (35%, 401/1159). Respondents' preferred method of instruction in ethics/professionalism was structured periodic discussions involving both faculty and students/trainees. More than 90% (1271/1384) supported continuing education in ethics/professionalism and 75% (1043/1386) stated they would attend ethics/professionalism sessions at professional/scientific meetings. In the research setting, reports about ethically questionable authorship assignment were frequent (approximately 40%) whereas incidents of ethically questionable practices about human subjects protections were quite infrequent (5%). In the clinical setting, there was frequent recollection of incidents regarding lack of training, resources and skills, and error/incident reporting. In the educational setting, incidents of unethical or ethically questionable practices were only frequently recollected with respect to mentorship/guidance. With respect to professional conduct, favoritism, hostile work/learning environment, and maltreatment of subordinates and colleagues were frequently reported. A significantly larger proportion of women reported experiences with hostile work/learning environments, favoritism, poor mentorship, unfairness in educational settings, and concerns about student privacy and confidentiality. The survey found broad interest in ethics/professionalism topics and revealed that these topics were being integrated into the curriculum at many institutions. The incorporation of ethics and professionalism instruction into both graduate education and postgraduate training of medical physicists, and into their subsequent lifelong continuing education is important given the nontrivial number of medical physicists who had direct personal knowledge of unethical or ethically questionable incidents in clinical practice, research, education, and professionalism.

Ethics and professionalism in medical physics: A survey of AAPM members

PubMed Central

Ozturk, Naim; Armato, Samuel G.; Giger, Maryellen L.; Serago, Christopher F.; Ross, Lainie F.

2013-01-01

Purpose: To assess current education, practices, attitudes, and perceptions pertaining to ethics and professionalism in medical physics. Methods: A link to a web-based survey was distributed to the American Association of Physicists in Medicine (AAPM) e-mail membership list, with a follow-up e-mail sent two weeks later. The survey included questions about ethics/professionalism education, direct personal knowledge of ethically questionable practices in clinical care, research, education (teaching and mentoring), and professionalism, respondents’ assessment of their ability to address ethical/professional dilemmas, and demographics. For analysis, reports of unethical or ethically questionable practices or behaviors by approximately 40% or more of respondents were classified as “frequent.” Results: Partial or complete responses were received from 18% (1394/7708) of AAPM members. Overall, 60% (827/1377) of the respondents stated that they had not received ethics/professionalism education during their medical physics training. Respondents currently in training were more likely to state that they received instruction in ethics/professionalism (80%, 127/159) versus respondents who were post-training (35%, 401/1159). Respondents’ preferred method of instruction in ethics/professionalism was structured periodic discussions involving both faculty and students/trainees. More than 90% (1271/1384) supported continuing education in ethics/professionalism and 75% (1043/1386) stated they would attend ethics/professionalism sessions at professional/scientific meetings. In the research setting, reports about ethically questionable authorship assignment were frequent (approximately 40%) whereas incidents of ethically questionable practices about human subjects protections were quite infrequent (5%). In the clinical setting, there was frequent recollection of incidents regarding lack of training, resources and skills, and error/incident reporting. In the educational setting, incidents of unethical or ethically questionable practices were only frequently recollected with respect to mentorship/guidance. With respect to professional conduct, favoritism, hostile work/learning environment, and maltreatment of subordinates and colleagues were frequently reported. A significantly larger proportion of women reported experiences with hostile work/learning environments, favoritism, poor mentorship, unfairness in educational settings, and concerns about student privacy and confidentiality. Conclusions: The survey found broad interest in ethics/professionalism topics and revealed that these topics were being integrated into the curriculum at many institutions. The incorporation of ethics and professionalism instruction into both graduate education and postgraduate training of medical physicists, and into their subsequent lifelong continuing education is important given the nontrivial number of medical physicists who had direct personal knowledge of unethical or ethically questionable incidents in clinical practice, research, education, and professionalism. PMID:23556930

"It's the Way That You Do It": Developing an Ethical Framework for Community Psychology Research and Action.

PubMed

Campbell, Rebecca

2016-12-01

In the 50 years since the 1965 Swampscott conference, the field of community psychology has not yet developed a well-articulated ethical framework to guide research and practice. This paper reviews what constitutes an "ethical framework"; considers where the field of community psychology is at in its development of a comprehensive ethical framework; examines sources for ethical guidance (i.e., ethical principles and standards) across multiple disciplines, including psychology, evaluation, sociology, and anthropology; and recommends strategies for developing a rich written discourse on how community psychology researchers and practitioners can address ethical conflicts in our work. © Society for Community Research and Action 2016.

Relationship between School Principals' Ethical Leadership Behaviours and Positive Climate Practices

ERIC Educational Resources Information Center

Eranil, Anil Kadir; Özbilen, Fatih Mutlu

2017-01-01

The aim of this study was to determine the relationship between school principals' ethical leadership behaviour and positive climate practices. Research sample consisted of 383 teachers working at schools affiliated to the Ministry of National Education in 2014-2015 academic year. This research was designed according to the relational model. Data…

Governing Well in Community-Based Research: Lessons from Canada's HIV Research Sector on Ethics, Publics and the Care of the Self.

PubMed

Guta, Adrian; Murray, Stuart J; Strike, Carol; Flicker, Sarah; Upshur, Ross; Myers, Ted

2017-11-01

In this paper, we extend Michel Foucault's final works on the 'care of the self' to an empirical examination of research practice in community-based research (CBR). We use Foucault's 'morality of behaviors' to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves-and others-in ways that often resist the propensity for domination through public health research. '…there are different ways to "conduct oneself" morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.' (Foucault, 1985: 26).

Going beyond Procedure: Engaging with the Ethical Complexities of Being an Embedded Researcher

ERIC Educational Resources Information Center

Rowley, Harriet

2014-01-01

This article is a reflection upon the ethical dimension of my work and practice as an embedded researcher during my doctorate. To begin with, I describe my experiences of gaining ethical approval from The University of Manchester while also highlighting some of the concerns that were raised by the ethics board. This leads me to recognise how the…

Can Neuroscience Contribute to Practical Ethics? A Critical Review and Discussion of the Methodological and Translational Challenges of the Neuroscience of Ethics.

PubMed

Racine, Eric; Dubljević, Veljko; Jox, Ralf J; Baertschi, Bernard; Christensen, Julia F; Farisco, Michele; Jotterand, Fabrice; Kahane, Guy; Müller, Sabine

2017-06-01

Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an 'ethics of neuroscience' and a 'neuroscience of ethics'. However, questions surface as to whether a 'neuroscience of ethics' is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. © 2017 John Wiley & Sons Ltd.

Opening the black box of ethics policy work: evaluating a covert practice.

PubMed

Frolic, Andrea; Drolet, Katherine; Bryanton, Kim; Caron, Carole; Cupido, Cynthia; Flaherty, Barb; Fung, Sylvia; McCall, Lori

2012-01-01

Hospital ethics committees (HECs) and ethicists generally describe themselves as engaged in four domains of practice: case consultation, research, education, and policy work. Despite the increasing attention to quality indicators, practice standards, and evaluation methods for the other domains, comparatively little is known or published about the policy work of HECs or ethicists. This article attempts to open the "black box" of this health care ethics practice by providing two detailed case examples of ethics policy reviews. We also describe the development and application of an evaluation strategy to assess the quality of ethics policy review work, and to enable continuous improvement of ethics policy review processes. Given the potential for policy work to impact entire patient populations and organizational systems, it is imperative that HECs and ethicists develop clearer roles, responsibilities, procedural standards, and evaluation methods to ensure the delivery of consistent, relevant, and high-quality ethics policy reviews.

Translational ethics: an analytical framework of translational movements between theory and practice and a sketch of a comprehensive approach.

PubMed

Bærøe, Kristine

2014-09-30

Translational research in medicine requires researchers to identify the steps to transfer basic scientific discoveries from laboratory benches to bedside decision-making, and eventually into clinical practice. On a parallel track, philosophical work in ethics has not been obliged to identify the steps to translate theoretical conclusions into adequate practice. The medical ethicist A. Cribb suggested some years ago that it is now time to debate 'the business of translational' in medical ethics. Despite the very interesting and useful perspective on the field of medical ethics launched by Cribb, the debate is still missing. In this paper, I take up Cribb's invitation and discuss further analytic distinctions needed to base an ethics aiming to translate between theory and practice. The analytic distinctions needed to base an ethics aiming to translate between theory and practice are identified as 'movements of translation'. I explore briefly what would constitute success and limitations to these intended translational movements by addressing the challenges of the epistemological gap between philosophical and practical ethics. The categories of translational movements I suggest can serve as a starting point for a systematic, collective self-inspection and discussion of the merits and limitations of the various academic and practical activities that bioethicists are engaged in. I further propose that translational ethics could be considered as a new discipline of ethical work constructively structured around compositions of translational movements. Breaking the idea of translational ethics into distinct translational movements provide us with a nuanced set of conditions to explore and discuss the justification and limitations of various efforts carried out in the field of bioethics. In this sense, the proposed framework could be a useful vehicle for augmented collective, self-reflexivity among both philosophers and practitioners who are 'doing bioethics'. Also, carefully designed, overall approaches combining justified, self-reflexive philosophical and practical efforts according to the suggested distinctions could be expected to realise - or at least improve a facilitation of - translation of ethics across the theory-practice gap.

Reflections on Ethics and Humanity in Pediatric Neurology: the Value of Recognizing Ethical Issues in Common Clinical Practice.

PubMed

Ronen, Gabriel M; Rosenbaum, Peter L

2017-05-01

Our goals in this reflection are to (i) identify the ethical dimensions inherent in any clinical encounter and (ii) bring to the forefront of our pediatric neurology practice the myriad of opportunities to explore and learn from these ethical questions. We highlight specifically Beauchamp and Childress's principles of biomedical ethics. We use the terms ethics in common clinical practice and an ethical lens to remind people of the ubiquity of ethical situations and the usefulness of using existing ethical principles to analyze and resolve difficult situations in clinical practice. We start with a few common situations with which many of us tend to struggle. We describe what we understand as ethics and how and why developments in technology, novel potential interventions, policies, and societal perspectives challenge us to think about and debate ethical issues. Individual patients are not a singular population; each patient has their own unique life situations, culture, goals, and expectations that need to be considered with a good dose of humanity and humility. We believe that using an ethical lens-by which we mean making an explicit effort to identify and consider these issues openly-will help us to achieve this goal in practice, education, and research.

Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line

PubMed Central

Fisher, Celia B.; True, Gala; Alexander, Leslie; Fried, Adam L.

2016-01-01

Background The role of front-line researchers, those whose responsibilities include face-to-face contact with participants, is critical to ensuring the responsible conduct of community-based drug use research. To date, there has been little empirical examination of how front-line researchers perceive the effectiveness of ethical procedures in their real-world application and the moral stress they may experience when adherence to scientific procedures appears to conflict with participant protections. Methods This study represents a first step in applying psychological science to examine the work-related attitudes, ethics climate, and moral dilemmas experienced by a national sample of 275 front-line staff members whose responsibilities include face-to-face interaction with participants in community-based drug-use research. Using an anonymous Web-based survey we psychometrically evaluated and examined relationships among six new scales tapping moral stress (frustration in response to perceived barriers to conducting research in a morally appropriate manner); organizational ethics climate; staff support; moral practice dilemmas (perceived conflicts between scientific integrity and participant welfare); research commitment; and research mistrust. Results As predicted, front-line researchers who evidence a strong commitment to their role in the research process and who perceive their organizations as committed to research ethics and staff support experienced lower levels of moral stress. Front-line researchers who were distrustful of the research enterprise and frequently grappled with moral practice dilemmas reported higher levels of moral stress. Conclusion Applying psychometrically reliable scales to empirically examine research ethics challenges can illuminate specific threats to scientific integrity and human subjects protections encountered by front-line staff and suggest organizational strategies for reducing moral stress and enhancing the responsible conduct of research. PMID:27795869

Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line.

PubMed

Fisher, Celia B; True, Gala; Alexander, Leslie; Fried, Adam L

2013-01-01

The role of front-line researchers, those whose responsibilities include face-to-face contact with participants, is critical to ensuring the responsible conduct of community-based drug use research. To date, there has been little empirical examination of how front-line researchers perceive the effectiveness of ethical procedures in their real-world application and the moral stress they may experience when adherence to scientific procedures appears to conflict with participant protections. This study represents a first step in applying psychological science to examine the work-related attitudes, ethics climate, and moral dilemmas experienced by a national sample of 275 front-line staff members whose responsibilities include face-to-face interaction with participants in community-based drug-use research. Using an anonymous Web-based survey we psychometrically evaluated and examined relationships among six new scales tapping moral stress (frustration in response to perceived barriers to conducting research in a morally appropriate manner); organizational ethics climate; staff support; moral practice dilemmas (perceived conflicts between scientific integrity and participant welfare); research commitment; and research mistrust. As predicted, front-line researchers who evidence a strong commitment to their role in the research process and who perceive their organizations as committed to research ethics and staff support experienced lower levels of moral stress. Front-line researchers who were distrustful of the research enterprise and frequently grappled with moral practice dilemmas reported higher levels of moral stress. Applying psychometrically reliable scales to empirically examine research ethics challenges can illuminate specific threats to scientific integrity and human subjects protections encountered by front-line staff and suggest organizational strategies for reducing moral stress and enhancing the responsible conduct of research.

Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research

PubMed Central

Roberts, Nia; Parker, Michael

2015-01-01

There is increasing support for sharing individual-level data generated by medical and public health research. This scoping review of empirical research and conceptual literature examined stakeholders’ perspectives of ethical best practices in data sharing, particularly in low- and middle-income settings. Sixty-nine empirical and conceptual articles were reviewed, of which, only five were empirical studies and eight were conceptual articles focusing on low- and middle-income settings. We conclude that support for sharing individual-level data is contingent on the development and implementation of international and local policies and processes to support ethical best practices. Further conceptual and empirical research is needed to ensure data sharing policies and processes in low- and middle-income settings are appropriately informed by stakeholders’ perspectives. PMID:26297745

On using ethical principles of community-engaged research in translational science.

PubMed

Khodyakov, Dmitry; Mikesell, Lisa; Schraiber, Ron; Booth, Marika; Bromley, Elizabeth

2016-05-01

The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large. Copyright © 2016 Elsevier Inc. All rights reserved.

On Using Ethical Principles of Community-Engaged Research in Translational Science

PubMed Central

Mikesell, Lisa; Schraiber, Ron; Booth, Marika; Bromley, Elizabeth

2015-01-01

The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of healthcare systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a re-consideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted two online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed nine ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA Appropriateness Method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be “grounded in trust.” While the academic panel endorsed “culturally appropriate” and “forthcoming with community about study risks and benefits,” the mixed academic-community panel endorsed “scientifically valid” and “ready to involve community in interpretation and dissemination” as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large. PMID:26773561

The current state of clinical ethics and healthcare ethics committees in Belgium

PubMed Central

Meulenbergs, T; Vermylen, J; Schotsmans, P

2005-01-01

Ethics committees are the most important practical instrument of clinical ethics in Belgium and fulfil three tasks: the ethical review of experimental protocols, advising on the ethical aspects of healthcare practice, and ethics consultation. In this article the authors examine the current situation of ethics committees in Belgium from the perspective of clinical ethics. Firstly, the most important steps which thus far have been taken in Belgium are examined. Secondly, recent opinion by the Belgian Advisory Committee on Bioethics with regard to ethics committees is presented and the activities of Belgian ethics committees are discussed. Finally, the option to bring research ethics and clinical ethics under the roof of just one committee is criticised using a pragmatic and a methodological argument. Concomitantly, the authors build an argument in favour of the further development of ethics consultation. PMID:15923477

Towards an empirical ethics in care: relations with technologies in health care.

PubMed

Pols, Jeannette

2015-02-01

This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the 'empirical turn' in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawing in relations between people and technologies as things people relate to. Empirical ethics studies care practices by analysing their intra-normativity, or the ways of living together the actors within these practices strive for or bring about as good practices. Different from care ethics, what care is and if it is good is not defined beforehand. A care practice may be contested by comparing it to alternative practices with different notions of good care. By contrasting practices as different ways of living together that are normatively oriented, suggestions for the best possible care may be argued for. Whether these suggestions will actually be put to practice is, however, again a relational question; new actors need to re-localize suggestions, to make them work in new practices and fit them in with local intra-normativities with their particular routines, material infrastructures, know-how and strivings.

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

PubMed

Wolf, Susan M; Burke, Wylie; Koenig, Barbara A

2015-01-01

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation. © 2015 American Society of Law, Medicine & Ethics, Inc.

Reconsidering 'ethics' and 'quality' in healthcare research: the case for an iterative ethical paradigm.

PubMed

Stevenson, Fiona A; Gibson, William; Pelletier, Caroline; Chrysikou, Vasiliki; Park, Sophie

2015-05-08

UK-based research conducted within a healthcare setting generally requires approval from the National Research Ethics Service. Research ethics committees are required to assess a vast range of proposals, differing in both their topic and methodology. We argue the methodological benchmarks with which research ethics committees are generally familiar and which form the basis of assessments of quality do not fit with the aims and objectives of many forms of qualitative inquiry and their more iterative goals of describing social processes/mechanisms and making visible the complexities of social practices. We review current debates in the literature related to ethical review and social research, and illustrate the importance of re-visiting the notion of ethics in healthcare research. We present an analysis of two contrasting paradigms of ethics. We argue that the first of these is characteristic of the ways that NHS ethics boards currently tend to operate, and the second is an alternative paradigm, that we have labelled the 'iterative' paradigm, which draws explicitly on methodological issues in qualitative research to produce an alternative vision of ethics. We suggest that there is an urgent need to re-think the ways that ethical issues are conceptualised in NHS ethical procedures. In particular, we argue that embedded in the current paradigm is a restricted notion of 'quality', which frames how ethics are developed and worked through. Specific, pre-defined outcome measures are generally seen as the traditional marker of quality, which means that research questions that focus on processes rather than on 'outcomes' may be regarded as problematic. We show that the alternative 'iterative' paradigm offers a useful starting point for moving beyond these limited views. We conclude that a 'one size fits all' standardisation of ethical procedures and approach to ethical review acts against the production of knowledge about healthcare and dramatically restricts what can be known about the social practices and conditions of healthcare. Our central argument is that assessment of ethical implications is important, but that the current paradigm does not facilitate an adequate understanding of the very issues it aims to invigilate.

Ethical issues in the reuse of qualitative data: perspectives from literature, practice, and participants.

PubMed

Yardley, Sarah J; Watts, Kate M; Pearson, Jennifer; Richardson, Jane C

2014-01-01

In this article, we explore ethical issues in qualitative secondary analysis through a comparison of the literature with practitioner and participant perspectives. To achieve this, we integrated critical narrative review findings with data from two discussion groups: qualitative researchers and research users/consumers. In the literature, we found that theoretical debate ran parallel to practical action rather than being integrated with it. We identified an important and novel theme of relationships that was emerging from the perspectives of researchers and users. Relationships were significant with respect to trust, sharing data, transparency and clarity, anonymity, permissions, and responsibility. We provide an example of practice development that we hope will prompt researchers to re-examine the issues in their own setting. Informing the research community of research practitioner and user perspectives on ethical issues in the reuse of qualitative data is the first step toward developing mechanisms to better integrate theoretical and empirical work.

[RESPECT FOR AUTONOMY AND CONFIDENTIALITY, BETWEEN "ETHICAL NORMS' AND "LOCAL MORALITY". AN ANTHROPOLOGICAL ANALYSIS OF ETHICS OF CARE IN ST LUCIA].

PubMed

Meudec, Marie

2015-10-01

This article considers the difficulty of applying ethical norms as part of an anthropological research on moralities and ethics of healing practices in St. Lucia (Caribbean). This reflection is based on the moral evaluations related to obeah, locally conceived as a set of magical, religious and witchcraft practices that helps to manage disease and misfortune. Through the analysis of local conceptions surrounding the ethical notions of autonomy and confidentiality, I call attention to potential nuisance caused by the application of principles of beneficence and respect for the individual. Indeed, local idioms that are moral discretion and self-sufficiency, which can respectively refer to the concepts of autonomy and confidentiality, are, paradoxically, both valued and likely to be associated with dubious morality. I will demonstrate that the fact of applying these principles in all ethnographic relationship may harm interlocutors by increasing, in the case of St. Lucia, the risk of witchcraft accusations and derogatory moral attributions. The anthropological field experience presented here questions the principles of beneficence and respect for the individual as defined in the field of research ethics; it also imposes the need to think about their adaptation to suit local representations. This leads to recommend a pragmatic and emerging ethics of anthropological research/practice.

The ethics of clinical research and the conduct of clinical drug trials: international comparisons and codes of conduct.

PubMed

Beran, R G

2000-01-01

Human research must respect most rigorous ethical standards to protect both the investigators and subjects. Codes of ethical practice relevant to such research are subjected to reviews around the world including The European Union (EU), the Canadian Tri-Council Policy Statement (including the Medical Research Council, the Natural Sciences and Engineering Research Council and the Social Sciences and Humanities Research Council), the Finnish Parliament Research Act (April 1999) and the National Statement on Ethical Conduct in Research Involving Humans in accordance with the NHMRC Act 1992 (Cth) from the National Health and Medical Research Council of Australia. The Australian Statement was endorsed by the Australian Vice-Chancellors' Committee, the Australian Research Council, the Australian Academy of the Humanities, the Australian Academy of Science and the Academy of Social Sciences in Australia and supported by the Academy of Technological Sciences and Engineering. This reflects the extensive ramifications of human experimentation and the range of stack holders. Private organisations have also produced interpretations of minimum standards of good clinical practice. The paper that follows analyses approaches to human experimentation and the minimal ethical expectations in the conduct of such research.

Trade in human tissue products.

PubMed

Tonti-Filippini, Nicholas; Zeps, Nikolajs

2011-03-07

Trade in human tissue in Australia is prohibited by state law, and in ethical guidelines by the National Health and Medical Research Council: National statement on ethical conduct in human research; Organ and tissue donation by living donors: guidelines for ethical practice for health professionals. However, trade in human tissue products is a common practice especially for: reconstructive orthopaedic or plastic surgery; novel human tissue products such as a replacement trachea created by using human mesenchymal stem cells; biomedical research using cell lines, DNA and protein provided through biobanks. Cost pressures on these have forced consideration of commercial models to sustain their operations. Both the existing and novel activities require a robust framework to enable commercial uses of human tissue products while maintaining community acceptability of such practices, but to date no such framework exists. In this article, we propose a model ethical framework for ethical governance which identifies specific ethical issues such as: privacy; unique value of a person's tissue; commodification of the body; equity and benefit to the community; perverse incentives; and "attenuation" as a potentially useful concept to help deal with the broad range of subjective views relevant to whether it is acceptable to commercialise certain human tissue products.

Research and Development for a Course in Ethics in Nursing Practice for Community College Associate Degree Nursing Students. Final Report.

ERIC Educational Resources Information Center

Roediger, Jeanette

A project was undertaken to research and acquire the instructional sources needed for a course in ethics for community college associate degree nursing students and to develop such a course. Addressed in the individual units of the course were the following topics: bioethics and ethical decision making, basic ethical concepts and principles,…

Deployment of Military Mothers during Wartime

DTIC Science & Technology

2012-11-12

Changes in Clinical Practice, Leadership, Management , Education, Policy, and/or Military Doctrine that Resulted from Study or Project 26...excellence Knowledge management Education and training Leadership, Ethics, and Mentoring: Health policy Recruitment and retention...research into practice/evidence-based practice Clinical excellence Knowledge management Education and training Leadership, Ethics, and Mentoring

Enhancing the African bioethics initiative.

PubMed

Ogundiran, Temidayo O

2004-10-15

Medical ethics has existed since the time of Hippocrates. However, formal training in bioethics did not become established until a few decades ago. Bioethics has gained a strong foothold in health sciences in the developed world, especially in Europe and North America. The situation is quite different in many developing countries. In most African countries, bioethics - as established and practiced today in the west- is either non-existent or is rudimentary. Though bioethics has come of age in the developed and some developing countries, it is still largely "foreign" to most African countries. In some parts of Africa, some bioethics conferences have been held in the past decade to create research ethics awareness and ensure conformity to international guidelines for research with human participants. This idea has arisen in recognition of the genuine need to develop capacity for reviewing the ethics of research in Africa. It is also a condition required by external sponsors of collaborative research in Africa. The awareness and interest that these conferences have aroused need to be further strengthened and extended beyond research ethics to clinical practice. By and large, bioethics education in schools that train doctors and other health care providers is the hook that anchors both research ethics and clinical ethics. This communication reviews the current situation of bioethics in Africa as it applies to research ethics workshops and proposes that in spite of the present efforts to integrate ethics into biomedical research in Africa, much still needs to be done to accomplish this. A more comprehensive approach to bioethics with an all-inclusive benefit is to incorporate formal ethics education into health training institutions in Africa.

Science and ethics of human immunodeficiency virus/acquired immunodeficiency syndrome controversies in Africa.

PubMed

Brewster, David

2011-09-01

The human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) epidemic in Africa has raised important ethical issues for both researchers and clinicians. The most notorious controversy has been related to the zidovudine (AZT) trials in Africa in the late 1990s, in which the control groups were given a placebo rather than an effective drug to prevent vertical transmission. This raised concerns in the sponsoring country about exploitation of subjects, injustice and an ethical double standard between donor countries and resource-poor settings. However, the real double standard is between clinical practice standards in Western versus African countries, which must be addressed as part of the increasing global inequity of wealth both between countries and also within countries. There are important limitations to ethical declarations, principles and guidelines on their own without contextual ethical reasoning. The focus on research ethics with the HIV epidemic has led to a relative neglect of ethical issues in clinical practice. Although the scientific advances in HIV/AIDS have changed the ethical issues since the 1990s, there has also been progress in the bioethics of HIV/AIDS in terms of ethical review capability by local committees as well as in exposure to ethical issues by clinicians and researchers in Africa. However, serious concerns remain about the overregulation of research by bureaucratic agencies which could discourage African research on specifically African health issues. There is also a need for African academic institutions and researchers to progressively improve their research capacity with the assistance of research funders and donor agencies. © 2011 The Author. Journal of Paediatrics and Child Health © 2011 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Governing Well in Community-Based Research: Lessons from Canada’s HIV Research Sector on Ethics, Publics and the Care of the Self

PubMed Central

Guta, Adrian; Murray, Stuart J; Strike, Carol; Flicker, Sarah; Upshur, Ross; Myers, Ted

2017-01-01

Abstract In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research. ‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26) PMID:29731810

Ethical Issues for an Editorial Board: "Kairaranga"

ERIC Educational Resources Information Center

Clark, John

2008-01-01

With academic journals, we think of the ethical aspects of the research contained in the articles rather than with the journal itself. However, journal editing has its own set of ethical concerns, which this article addresses. One is ensuring that the anonymity of institutions and participants, in research and the reporting of practice, is…

The Ethical Function of Research and Teaching

ERIC Educational Resources Information Center

Tabensky, Pedro Alexis

2014-01-01

It is the epistemic as well as the ethical responsibility of academics to aim to approach their research and teaching with a proper understanding of the ultimate ethical purpose or telos of their defining activities and products, which is the practical aim of promoting human flourishing. Minimally, academics should aim at understanding, and a key…

Developing Ethical Adult Educators: A Re-Examination of the Need for a Code of Ethics

ERIC Educational Resources Information Center

Hatcher, Tim; Storberg-Walker, Julia

2003-01-01

The moral philosophies and normative ethical guidelines of a profession influence its practice and research. More than simply assigning merit or worth to outcomes or processes, ethics is the milieu in which professionals establish integrity and develop solidarity through normative ethical worldviews. Thus, in increasingly complex contexts, adult…

Ethical Practice: A Study of Chilean School Leaders

ERIC Educational Resources Information Center

Cuellar, Carolina; Giles, David L.

2012-01-01

Purpose: This article seeks to report on a research inquiry that explored the educational praxis of ethical school leaders in Chile. Behaving ethically is an imperative for school leaders. Being an ethical educational leader is something different. It is not only about behaving according to standards, but also rather involves an ethical way of…

Is mandatory research ethics reviewing ethical?

PubMed

Dyck, Murray; Allen, Gary

2013-08-01

Review boards responsible for vetting the ethical conduct of research have been criticised for their costliness, unreliability and inappropriate standards when evaluating some non-medical research, but the basic value of mandatory ethical review has not been questioned. When the standards that review boards use to evaluate research proposals are applied to review board practices, it is clear that review boards do not respect researchers or each other, lack merit and integrity, are not just and are not beneficent. The few benefits of mandatory ethical review come at a much greater, but mainly hidden, social cost. It is time that responsibility for the ethical conduct of research is clearly transferred to researchers, except possibly in that small proportion of cases where prospective research participants may be so intrinsically vulnerable that their well-being may need to be overseen.

Ethical Issues in Cardiac Surgery

PubMed Central

Kavarana, Minoo N.; Sade, Robert M.

2012-01-01

While ethical behavior has always been part of cardiac surgical practice, ethical deliberation has only recently become an important component of cardiac surgical practice. Issues such as informed consent, conflict of interest, and professional self-regulation, among many others, have increasingly attracted the attention of cardiac surgeons. This review covers several broad topics of interest to cardiac surgeons and cardiologists, and treats several other topics more briefly. There is much uncertainty about what the future holds for cardiac surgical practice, research, and culture, and we discuss the background of ethical issues to serve as a platform for envisioning what is to come. PMID:22642634

Ethical adoption: A new imperative in the development of technology for dementia.

PubMed

Robillard, Julie M; Cleland, Ian; Hoey, Jesse; Nugent, Chris

2018-06-19

Technology interventions are showing promise to assist persons with dementia and their carers. However, low adoption rates for these technologies and ethical considerations have impeded the realization of their full potential. Building on recent evidence and an iterative framework development process, we propose the concept of "ethical adoption": the deep integration of ethical principles into the design, development, deployment, and usage of technology. Ethical adoption is founded on five pillars, supported by empirical evidence: (1) inclusive participatory design; (2) emotional alignment; (3) adoption modelling; (4) ethical standards assessment; and (5) education and training. To close the gap between adoption research, ethics and practice, we propose a set of 18 practical recommendations based on these ethical adoption pillars. Through the implementation of these recommendations, researchers and technology developers alike will benefit from evidence-informed guidance to ensure their solution is adopted in a way that maximizes the benefits to people with dementia and their carers while minimizing possible harm. Copyright © 2018 the Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

WASP (Write a Scientific Paper): Ethics approval for a research study (1).

PubMed

Mallia, Pierre

2018-06-04

Past experience in science has thought us the importance of ethics in research. Research is important to the advancement of medicine and therefore good clinical practice in research maintains public trust which otherwise is not only lost but may cause science to seem negative. The rights of participants in the research trial are discussed. This includes knowledge and information about the research itself, the obligations of the researchers and the rights of participants during the research. The EU Directive on Good Clinical Practice in research trials is reviewed, including the twelve principles of the directive. The function and composition of Research Ethics Committees is discussed in the context of protecting patients and participants, asserting quality and monitoring of the research, qualifications of the scientists and liability. Copyright © 2018 Elsevier B.V. All rights reserved.

Neuroscientists' everyday experiences of ethics: the interplay of regulatory, professional, personal and tangible ethical spheres.

PubMed

Brosnan, Caragh; Cribb, Alan; Wainwright, Steven P; Williams, Clare

2013-11-01

The ethical issues neuroscience raises are subject to increasing attention, exemplified in the emergence of the discipline neuroethics. While the moral implications of neurotechnological developments are often discussed, less is known about how ethics intersects with everyday work in neuroscience and how scientists themselves perceive the ethics of their research. Drawing on observation and interviews with members of one UK group conducting neuroscience research at both the laboratory bench and in the clinic, this article examines what ethics meant to these researchers and delineates four specific types of ethics that shaped their day-to-day work: regulatory, professional, personal and tangible. While the first three categories are similar to those identified elsewhere in sociological work on scientific and clinical ethics, the notion of 'tangible ethics' emerged by attending to everyday practice, in which these scientists' discursive distinctions between right and wrong were sometimes challenged. The findings shed light on how ethical positions produce and are, in turn, produced by scientific practice. Informing sociological understandings of neuroscience, they also throw the category of neuroscience and its ethical specificity into question, given that members of this group did not experience their work as raising issues that were distinctly neuro-ethical. © 2013 The Authors. Sociology of Health & Illness © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

A Summary of Important Documents in the Field of Research Ethics

PubMed Central

Fischer, Bernard A

2006-01-01

Today's researchers are obligated to conduct their studies ethically. However, it often seems a daunting task to become familiar with the important ethical codes required to do so. The purpose of this article is to examine the content of those ethical documents most relevant to the biomedical researcher. Documents examined include the Nuremberg Code, the Declaration of Helsinki, Henry Beecher's landmark paper, the Belmont Report, the U.S. Common Rule, the Guideline for Good Clinical Practice, and the National Bioethics Advisory Commission's report on research protections for the mentally ill. PMID:16192409

Ethical issues in research and publication.

PubMed

Iammarino, N K; O'Rourke, T W; Pigg, R M; Weinberg, A D

1989-03-01

Ethical considerations inherent in the process of research and publication represent one issue of particular concern to professionals. Members of a profession usually are guided by a code of ethics that specifies standards for practice. However, rarely do professional preparation programs sufficiently prepare students to deal with the concerns associated with research and professional publication. The authors address three specific areas of concern for health educators: the student-professor relationship, joint authorship, and ethics in publishing. Potential problems are discussed, and implications for the profession are cited.

Fogarty research ethics training programs in the Asia-Pacific: the merging of cultures.

PubMed

Pratt, Bridget; Van, Cassandra; Trevorrow, Emily; Loff, Bebe

2014-04-01

In-depth interviews were undertaken with nine principal investigators and 16 former trainees from eight FIC programs recruiting trainees from the Asia-Pacific to assess the impact of training. Incorporation of new knowledge into teaching, research, and medical practice; advanced training; and ethics committee participation were the most common outcomes identified. When attempting to implement ethics activities posttraining, trainees often had to contend with opposition from more senior staff. Approaches that enhanced the cultural relevance of program content were identified as necessary, including comparing/contrasting non-Western principles and religions with Western bioethics, using region-specific case studies, and integrating clinical and research ethics. Best practices associated with program and trainee success included selecting more senior trainees clustered within Asia-Pacific institutions, offering a variety of degree and nondegree options, and post-training mentorship and networking support. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.

A Code of Ethics and Integrity for HRD Research and Practice.

ERIC Educational Resources Information Center

Hatcher, Tim; Aragon, Steven R.

2000-01-01

Describes the rationale for a code of ethics and integrity in human resource development (HRD). Outlines the Academy of Human Resource Development's standards. Reviews ethical issues faced by the HRD profession. (SK)

Medical ethics surveillance in the Armed Forces.

PubMed

Pearn, J

2000-05-01

Modern defense services depend on a policy of the vigorous promotion of research to ensure that they retain an advantage in any future operational context. Research involving personnel within the armed forces, however, has certain constraints with respect to contemporary, best-practice medical ethics. Service members are one example of a class of "captive subjects" who require special protection in the context of medical research. (Prisoners, students, children, and the intellectually disabled are other such examples.) The majority of national defense forces now have ethical watchdog groups--institutional ethics committees--that oversee research involving service members. Such groups monitor the special considerations and constraints under which subjects in uniform can volunteer for biological research. These committees audit particularly the ethical themes of confidentiality, equality, and justice. Themes inherent in medical research in the military include the standard Beauchamp-Childress paradigm of autonomy, beneficence, nonmaleficence, and justice, to which are added the traditional military values of loyalty, respect, courtesy, and chivalry. Contemporary thinking is that the general principle of affording service members the opportunity to volunteer for research should be maintained within the constraints of compromised training time, national security, and operational necessity. Most biological research (and its outcome) does not in practice compromise confidentiality or military security. This paper presents an audit of the functioning of one national military medical ethics committee, the Australian Defence Medical Ethics Committee, and presents a discussion of its philosophies and influence within the broader military context. The Australian Defence Medical Ethics Committee believes that most research should, as an a priori condition of approval, be intended for open publication in peer-reviewed journals.

Australian Aboriginal and Torres Strait Islander-focused primary healthcare social and emotional wellbeing research: a systematic review protocol.

PubMed

Farnbach, Sara; Eades, Anne-Marie; Hackett, Maree Lisa

2015-12-30

Research with a focus on Aboriginal and Torres Strait Islander Australian's (hereafter referred to as Indigenous(1)) needs is crucial to ensure culturally appropriate evidence-based strategies are developed to improve health. However, concerns surrounding this research exist, arising from some previous research lacking community consultation, resulting in little community benefit or infringing on important cultural values. Values and Ethics: Guidelines for Ethical conduct in Aboriginal and Torres Strait Islander Health Research (hereafter referred to as Values and Ethics), developed by The National Health and Medical Research Council of Australia in 2003, is the ethical standard for Indigenous-focused health research. Researchers must address its Values in research design and conduct. However, its impact on research processes is unclear. Local Protocols should also be considered. This review aims to systematically examine practices related to Values and Ethics, Local Protocols and the processes of conducting Indigenous-focused primary healthcare research in collaboration with external researchers. The following electronic databases and grey literature will be searched (2003 to current): MEDLINE, EMBASE, CINAHL, Informit and HealthInfoNet--an Indigenous-specific research and program website. Indigenous-focused research will be included. Research must be conducted in one or more primary healthcare services, in collaboration with external researchers and with a focus on social and emotional well being. One reviewer will review titles and abstracts to remove obviously irrelevant research articles. Full-text research articles will be retrieved and independently examined by two reviewers. Data and quality assessment will be completed by one reviewer and verified by a second reviewer. Quality will be assessed using modified versions of established quality assessment tools. This review will provide information on research processes and the impact of Values and Ethics on Indigenous-focused primary healthcare research, informing communities and primary healthcare staff around research practices, and researchers and policy makers of strengths and weaknesses of practice. PROSPERO CRD42015024994.

A review of Indian psychiatry research and ethics

PubMed Central

Agarwal, A. K.

2010-01-01

Ethics does not seem to be a favorite topic of Indian authors. Electronic search of the IJP web site could only identify six articles which were directly related to ethics. One article discussed the relationship of ethics religion and psychiatry. Another editorial discussed the concept of responsibility in psychiatrists. Other editorial discussed the truth about ‘truth serum’ in legal investigations. One article discussed the ethical aspects of published research. There were two articles that specifically discussed ethical aspects. This write-up provides some details about the ethical aspects of psychiatric practice, specific to India, and emphasizes the need to rediscover ethics in India. PMID:21836698

Reasoning Backwards by Design: Commentary on "Moral Reasoning among HEC Members".

PubMed

Stephens, Ashley L; Heitman, Elizabeth

2015-01-01

Empirical assessment of the practice of clinical ethics is made difficult by the limited standardization of settings, structures, processes, roles, and training for ethics consultation, as well as by whether individual ethics consultants or hospital ethics committees (HECs) provide consultation. Efforts to study the relationship between theory and practice in the work of HECs likewise require the spelling out of assumptions and definition of key variables, based in knowledge of the core concepts of clinical ethics and logistics of clinical consultation. The survey of HEC members reported by Wasserman and colleagues illustrates the difficulty of such research and calls attention to need for studies of real-time, complex decision making to inform conclusions about how theory affects practice. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

From Theory to Practice: Faculty Training in Business Ethics.

ERIC Educational Resources Information Center

Boatright, John R.

1991-01-01

Claims that training business faculty in ethics is a critical component of including ethics in the business curriculum. Includes suggestions concerning what business faculty should know about ethical theory, how to include theory, and curricular and teaching issues. Describes research projects, publications, and workshops. (DK)

Gaming, texting, learning? Teaching engineering ethics through students' lived experiences with technology.

PubMed

Voss, Georgina

2013-09-01

This paper examines how young peoples' lived experiences with personal technologies can be used to teach engineering ethics in a way which facilitates greater engagement with the subject. Engineering ethics can be challenging to teach: as a form of practical ethics, it is framed around future workplace experience in a professional setting which students are assumed to have no prior experience of. Yet the current generations of engineering students, who have been described as 'digital natives', do however have immersive personal experience with digital technologies; and experiential learning theory describes how students learn ethics more successfully when they can draw on personal experience which give context and meaning to abstract theories. This paper reviews current teaching practices in engineering ethics; and examines young people's engagement with technologies including cell phones, social networking sites, digital music and computer games to identify social and ethical elements of these practices which have relevance for the engineering ethics curricula. From this analysis three case studies are developed to illustrate how facets of the use of these technologies can be drawn on to teach topics including group work and communication; risk and safety; and engineering as social experimentation. Means for bridging personal experience and professional ethics when teaching these cases are discussed. The paper contributes to research and curriculum development in engineering ethics education, and to wider education research about methods of teaching 'the net generation'.

Ethical international research on human subjects research in the absence of local institutional review boards.

PubMed

Bhat, S B; Hegde, T T

2006-09-01

International health-related research on human subjects entails unique ethical responsibilities and difficulties. Often, these difficulties are augmented by the lack of a local ethical review infrastructure. In a recent cross-national study conducted by us, three critical components of ethical regulation were identified--external oversight, local oversight and subject involvement--and integrated into the study design. These three concepts are outlined and established as an important aspect of ensuring ethical coherence in the local context, particularly when reviews by the local institutional review boards cannot practically be obtained. The three levels of ethical oversight identified are suggested to be the framework within which future field studies on human subjects are developed and a standard for maintaining ethical rigorousness in research on humans.

Ethical Issues in Designing Internet-Based Research: Recommendations for Good Practice

ERIC Educational Resources Information Center

Gupta, Shikha

2017-01-01

This article presents an overview of internet-based research, highlighting the absence of a standard terminology to define and classify such research. The label internet-based research or online research can cover a diverse range of research designs and methods, involving different degrees of ethical concern regarding privacy, transparency,…

Community Partnered Research Ethics Training in Practice – A Collaborative Approach to Certification

PubMed Central

Yonas, Michael A.; Jaime, Maria Catrina D.; Barone, Jean; Valenti, Shannon; Documét, Patricia; Ryan, Christopher M.; Miller, Elizabeth

2016-01-01

This report describes the development and implementation of a tailored research ethics training that for academic investigators and community research partners (CRP). The Community Partnered Research Ethics Training (CPRET) and Certification is a free and publicly available model and resource created by a university and community partnership to ensure that traditional and non-traditional research partners may study, define and apply principles of human subjects’ research. To date, 7 academic and 34 CRP teams have used this highly interactive, engaging, educational and relationship building process to learn human subjects’ research and be certified by the University of Pittsburgh IRB. This accessible, flexible and engaging research ethics training process serves as a vehicle to strengthen community and academic partnerships to conduct ethical and culturally sensitive research. PMID:27241871

Research Ethics Education for Community-Engaged Research: A Review and Research Agenda

PubMed Central

Anderson, Emily E.; Solomon, Stephanie; Heitman, Elizabeth; DuBois, James M.; Fisher, Celia B.; Kost, Rhonda G.; Lawless, Mary Ellen; Ramsey, Cornelia; Jones, Bonnie; Ammerman, Alice; Ross, Lainie Friedman

2012-01-01

Community engagement is increasingly becoming an integral part of research. “Community-engaged research” (CEnR) introduces new stakeholders as well as unique challenges to the protection of participants and the integrity of the research process. We—a group of representatives of CTSA-funded institutions and others who share expertise in research ethics and CEnR—have identified gaps in the literature regarding (1) ethical issues unique to CEnR; (2) the particular instructional needs of academic investigators, community research partners, and IRB members; and (3) best practices for teaching research ethics. This paper presents what we know, as well as what we still need to learn, in order to develop quality research ethics educational materials tailored to the full range of stakeholder groups in CEnR. PMID:22565579

Taking stock of the ethical foundations of international health research: pragmatic lessons from the IU-Moi Academic Research Ethics Partnership.

PubMed

Meslin, Eric M; Were, Edwin; Ayuku, David

2013-09-01

It is a sine qua non that research and health care provided in international settings raise profound ethical questions when different cultural and political values are implicated. Yet ironically, as international health research expands and as research on ethical issues in international health research broadens and deepens, we appear to have moved away from discussing the moral foundations of these activities. For international health research to thrive and lead to the kind of benefits it is capable of, it is helpful to occasionally revisit the foundational premises that justify the enterprise as a whole. We draw on the experience of the Indiana University-Moi University Academic Research Ethics Partnership, an innovative bioethics training program co-located in Indianapolis and Eldoret, Kenya to highlight the changing nature of ethical issues in international health research and the ongoing practical challenges.

The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics.

PubMed

Fisher, Celia B; Yuko, Elizabeth

2015-12-01

The responsible conduct of HIV/drug abuse prevention research requires investigators with both the knowledge of and ability to generate empirical data that can enhance global ethical practices and policies. This article describes a multidisciplinary program offering early-career professionals a 2-year intensive summer curriculum along with funding to conduct a mentored research study on a wide variety of HIV/drug abuse research ethics topics. Now in its fifth year, the program has admitted 29 trainees who have to date demonstrated increased knowledge of research ethics, produced 17 peer-reviewed publications, 46 professional presentations, and submitted or been awarded five related federal grants. The institute also hosts a global information platform providing general and HIV/drug abuse relevant research ethics educational and research resources that have had more than 38,800 unique visitors from more than 150 countries. © The Author(s) 2015.

Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees.

PubMed

Juritzen, Truls I; Grimen, Harald; Heggen, Kristin

2011-09-01

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault's ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed - not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.

The HIV and Drug Abuse Prevention Research Ethics Training Institute: Training Early-Career Scientists to Conduct Research on Research Ethics

PubMed Central

Fisher, Celia B.; Yuko, Elizabeth

2018-01-01

The responsible conduct of HIV/drug abuse prevention research requires investigators with both the knowledge of and ability to generate empirical data that can enhance global ethical practices and policies. This article describes a multidisciplinary program offering early-career professionals a 2-year intensive summer curriculum along with funding to conduct a mentored research study on a wide variety of HIV/drug abuse research ethics topics. Now in its fifth year, the program has admitted 29 trainees who have to date demonstrated increased knowledge of research ethics, produced 17 peer-reviewed publications, 46 professional presentations, and submitted or been awarded five related federal grants. The institute also hosts a global information platform providing general and HIV/drug abuse relevant research ethics educational and research resources that have had more than 38,800 unique visitors from more than 150 countries. PMID:26564944

Legal and ethical issues in research.

PubMed

Yip, Camille; Han, Nian-Lin Reena; Sng, Ban Leong

2016-09-01

Legal and ethical issues form an important component of modern research, related to the subject and researcher. This article seeks to briefly review the various international guidelines and regulations that exist on issues related to informed consent, confidentiality, providing incentives and various forms of research misconduct. Relevant original publications (The Declaration of Helsinki, Belmont Report, Council for International Organisations of Medical Sciences/World Health Organisation International Guidelines for Biomedical Research Involving Human Subjects, World Association of Medical Editors Recommendations on Publication Ethics Policies, International Committee of Medical Journal Editors, CoSE White Paper, International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use-Good Clinical Practice) form the literature that are relevant to the ethical and legal aspects of conducting research that researchers should abide by when conducting translational and clinical research. Researchers should note the major international guidelines and regional differences in legislation. Hence, specific ethical advice should be sought at local Ethics Review Committees.

Science ethics education part II: changes in attitude toward scientific fraud among medical researchers after a short course in science ethics.

PubMed

Vuckovic-Dekic, L; Gavrilovic, D; Kezic, I; Bogdanovic, G; Brkic, S

2012-01-01

To determine the impact of the short science ethics courses on the knowledge of basic principles of responsible conduct of research (RCR), and on the attitude toward scientific fraud among young biomedical researchers. A total of 361 attendees of the course on science ethics answered a specially designed anonymous multiple- choice questionnaire before and after a one-day course in science ethics. The educational course consisted of 10 lectures: 1) Good scientific practice - basic principles; 2) Publication ethics; 3) Scientific fraud - fabrication, falsification, plagiarism; 4) Conflict of interests; 5) Underpublishing; 6) Mentorship; 7) Authorship; 8) Coauthorship; 9) False authorship; 10) Good scientific practice - ethical codex of science. In comparison to their answers before the course, a significantly higher (p<0.001) number of students qualified their knowledge of science ethics as sufficient after the course was completed. That the wrongdoers deserve severe punishment for all types of scientific fraud, including false authorship, thought significantly (p<0.001) more attendees than before the course, while notably fewer attendees (p<0.001) would give or accept undeserved authorship Even a short course in science ethics had a great impact on the attendees, enlarging their knowledge of responsible conduct of research and changing their previous, somewhat opportunistic, behavior regarding the reluctance to react publicly and punish the wrongdoers.

Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents' and physicians' experiences

PubMed Central

2011-01-01

Background Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. Methodology An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Results Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Conclusion Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. PMID:21943406

Enhancing the African bioethics initiative

PubMed Central

Ogundiran, Temidayo O

2004-01-01

Background Medical ethics has existed since the time of Hippocrates. However, formal training in bioethics did not become established until a few decades ago. Bioethics has gained a strong foothold in health sciences in the developed world, especially in Europe and North America. The situation is quite different in many developing countries. In most African countries, bioethics – as established and practiced today in the west- is either non-existent or is rudimentary. Discussion Though bioethics has come of age in the developed and some developing countries, it is still largely "foreign" to most African countries. In some parts of Africa, some bioethics conferences have been held in the past decade to create research ethics awareness and ensure conformity to international guidelines for research with human participants. This idea has arisen in recognition of the genuine need to develop capacity for reviewing the ethics of research in Africa. It is also a condition required by external sponsors of collaborative research in Africa. The awareness and interest that these conferences have aroused need to be further strengthened and extended beyond research ethics to clinical practice. By and large, bioethics education in schools that train doctors and other health care providers is the hook that anchors both research ethics and clinical ethics. Summary This communication reviews the current situation of bioethics in Africa as it applies to research ethics workshops and proposes that in spite of the present efforts to integrate ethics into biomedical research in Africa, much still needs to be done to accomplish this. A more comprehensive approach to bioethics with an all-inclusive benefit is to incorporate formal ethics education into health training institutions in Africa. PMID:15488145

Physician to investigator: clinical practice to clinical research--ethical, operational, and financial considerations.

PubMed

Pierre, Christine

2008-01-01

Physicians who participate in clinical research studies gain benefits for themselves, their practice, and their patients. Historically, private practice physicians have chosen to defer to their counterparts in academic medicine when it comes to contributing to scientific advancement through clinical studies. A growing number of private practice physicians are now taking a serious second look and deciding that there are unique benefits for both the practice and the patient. Physicians who decide to participate in clinical research should give serious consideration to the time and resources that are required to meet both federal regulations and industry standards. In addition, ethical and scientific principles for assuring the protection of human research subjects must be a paramount commitment.

Chinese Student Teachers' Perspectives on Becoming a Teacher in the Practicum: Emotional and Ethical Dimensions of Identity Shaping

ERIC Educational Resources Information Center

Zhu, Gang

2017-01-01

This research examines the emotional and ethical dimensions of identity shaping in student teachers' teaching practicum. By interviewing seven Chinese student teachers who had just finished their student teaching practice, the research examines the participants' emotional experiences and the ethical dilemmas they encountered in their practicum.…

The Role of Empirical Research in Bioethics

PubMed Central

Kon, Alexander A.

2010-01-01

There has long been tension between bioethicists whose work focuses on classical philosophical inquiry and those who perform empirical studies on bioethical issues. While many have argued that empirical research merely illuminates current practices and cannot inform normative ethics, others assert that research-based work has significant implications for refining our ethical norms. In this essay, I present a novel construct for classifying empirical research in bioethics into four hierarchical categories: Lay of the Land, Ideal Versus Reality, Improving Care, and Changing Ethical Norms. Through explaining these four categories and providing examples of publications in each stratum, I define how empirical research informs normative ethics. I conclude by demonstrating how philosophical inquiry and empirical research can work cooperatively to further normative ethics. PMID:19998120

The role of empirical research in bioethics.

PubMed

Kon, Alexander A

2009-01-01

There has long been tension between bioethicists whose work focuses on classical philosophical inquiry and those who perform empirical studies on bioethical issues. While many have argued that empirical research merely illuminates current practices and cannot inform normative ethics, others assert that research-based work has significant implications for refining our ethical norms. In this essay, I present a novel construct for classifying empirical research in bioethics into four hierarchical categories: Lay of the Land, Ideal Versus Reality, Improving Care, and Changing Ethical Norms. Through explaining these four categories and providing examples of publications in each stratum, I define how empirical research informs normative ethics. I conclude by demonstrating how philosophical inquiry and empirical research can work cooperatively to further normative ethics.

Ethics and Representation in Qualitative Studies of Literacy.

ERIC Educational Resources Information Center

Mortensen, Peter, Ed.; Kirsch, Gesa E., Ed.

Reflecting on the practice of qualitative literacy research, this book presents 14 essays that address the most pressing questions faced by qualitative researchers today: how to represent others and themselves in research narratives; how to address ethical dilemmas in research-participant relations; and how to deal with various rhetorical,…

The Top 10 Ethical Challenges in Dental Practice in Indian Scenario: Dentist Perspective

PubMed Central

Kemparaj, Vanishree M.; Panchmal, Ganesh Shenoy; Kadalur, Umashankar Gangadaraiah

2018-01-01

Aim: This exploratory qualitative research is an attempt to assess the health care ethical challenges in dental practice in an Indian scenario. Methodology: Qualitative indepth interview was conducted on 20 dental professionals to assess the ethical challenges prevailing in dental practice in Indian scenario. After obtaining the responses the verbatims were categorized into categories and finally 36 themes emerged. Later from two group of 6 panellists each after conducting focus group discussion the themes of ethical issues occurring in dental practice were ranked based on order of significance impact on the practice, patient and society using Delphi method. Result: The top ten ethical challenges listed by the panellists are inadequate sterilization and waste management in dental clinics, poor knowledge and attitude towards ethics among our dental practitioners, in competence among dental professional, increase in cost of oral health service, poor informed consent process, requirement of consensus about the treatment procedures among dentists, Conflict in Advertising, clustering of dental clinics in urban areas, disagreement with treatment modalities among dentist and patient, poor medical record maintenance among our dental practitioners. Conclusion: The study attempts to bring the prevailing ethical challenges in oral health care practice in Indian scenario. PMID:29599593

Teaching Ethics in International Business Courses: The Impacts of Religions

ERIC Educational Resources Information Center

Ruhe, John; Lee, Monle

2008-01-01

Implicit in most comparative ethical studies is the assumption that cultural and religious differences between countries are the major reasons behind the variations in ethical beliefs and business practice across nations. This article examines research on the international ethical issues and the common moral concerns that permeate differing…

Curricular priorities for business ethics in medical practice and research: recommendations from Delphi consensus panels.

PubMed

DuBois, James M; Kraus, Elena M; Gursahani, Kamal; Mikulec, Anthony; Bakanas, Erin

2014-11-15

No published curricula in the area of medical business ethics exist. This is surprising given that physicians wrestle daily with business decisions and that professional associations, the Institute of Medicine, Health and Human Services, Congress, and industry have issued related guidelines over the past 5 years. To fill this gap, the authors aimed (1) to identify the full range of medical business ethics topics that experts consider important to teach, and (2) to establish curricular priorities through expert consensus. In spring 2012, the authors conducted an online Delphi survey with two heterogeneous panels of experts recruited in the United States. One panel focused on business ethics in medical practice (n = 14), and 1 focused on business ethics in medical research (n = 12). Panel 1 generated an initial list of 14 major topics related to business ethics in medical practice, and subsequently rated 6 topics as very important or essential to teach. Panel 2 generated an initial list of 10 major topics related to business ethics in medical research, and subsequently rated 5 as very important or essential. In both domains, the panel strongly recommended addressing problems that conflicts of interest can cause, legal guidelines, and the goals or ideals of the profession. The Bander Center for Medical Business Ethics at Saint Louis University will use the results of the Delphi panel to develop online curricular resources for each of the highest rated topics.

The ethical challenges of animal research.

PubMed

Ferdowsian, Hope R; Gluck, John P

2015-10-01

In 1966, Henry K. Beecher published an article entitled "Ethics and Clinical Research" in the New England Journal of Medicine, which cited examples of ethically problematic human research. His influential paper drew attention to common moral problems such as inadequate attention to informed consent, risks, and efforts to provide ethical justification. Beecher's paper provoked significant advancements in human research policies and practices. In this paper, we use an approach modeled after Beecher's 1966 paper to show that moral problems with animal research are similar to the problems Beecher described for human research. We describe cases that illustrate ethical deficiencies in the conduct of animal research, including inattention to the issue of consent or assent, incomplete surveys of the harms caused by specific protocols, inequitable burdens on research subjects in the absence of benefits to them, and insufficient efforts to provide ethical justification. We provide a set of recommendations to begin to address these deficits.

Research Integrity and Research Ethics in Professional Codes of Ethics: Survey of Terminology Used by Professional Organizations across Research Disciplines.

PubMed

Komić, Dubravka; Marušić, Stjepan Ljudevit; Marušić, Ana

2015-01-01

Professional codes of ethics are social contracts among members of a professional group, which aim to instigate, encourage and nurture ethical behaviour and prevent professional misconduct, including research and publication. Despite the existence of codes of ethics, research misconduct remains a serious problem. A survey of codes of ethics from 795 professional organizations from the Illinois Institute of Technology's Codes of Ethics Collection showed that 182 of them (23%) used research integrity and research ethics terminology in their codes, with differences across disciplines: while the terminology was common in professional organizations in social sciences (82%), mental health (71%), sciences (61%), other organizations had no statements (construction trades, fraternal social organizations, real estate) or a few of them (management, media, engineering). A subsample of 158 professional organizations we judged to be directly involved in research significantly more often had statements on research integrity/ethics terminology than the whole sample: an average of 10.4% of organizations with a statement (95% CI = 10.4-23-5%) on any of the 27 research integrity/ethics terms compared to 3.3% (95% CI = 2.1-4.6%), respectively (P<0.001). Overall, 62% of all statements addressing research integrity/ethics concepts used prescriptive language in describing the standard of practice. Professional organizations should define research integrity and research ethics issues in their ethics codes and collaborate within and across disciplines to adequately address responsible conduct of research and meet contemporary needs of their communities.

Work engagement in nursing practice: a relational ethics perspective.

PubMed

Keyko, Kacey

2014-12-01

The concept of work engagement has existed in business and psychology literature for some time. There is a significant body of research that positively correlates work engagement with organizational outcomes. To date, the interest in the work engagement of nurses has primarily been related to these organizational outcomes. However, the value of work engagement in nursing practice is not only an issue of organizational interest, but of ethical interest. The dialogue on work engagement in nursing must expand to include the ethical importance of engagement. The relational nature of work engagement and the multiple levels of influence on nurses' work engagement make a relational ethics approach to work engagement in nursing appropriate and necessary. Within a relational ethics perspective, it is evident that work engagement enables nurses to have meaningful relationships in their work and subsequently deliver ethical care. In this article, I argue that work engagement is essential for ethical nursing practice. If engagement is essential for ethical nursing practice, the environmental and organizational factors that influence work engagement must be closely examined to pursue the creation of moral communities within healthcare environments. © The Author(s) 2014.

Ethical Issues Involving Research Conducted with Homebound Older Adults

ERIC Educational Resources Information Center

Locher, Julie L.; Bronstein, Janet; Robinson, Caroline O.; Williams, Charlotte; Ritchie, Christine S.

2006-01-01

Conducting research in the home setting with homebound older adults presents distinct ethical and practical challenges that require special consideration. This article describes the methodological issues that make studying homebound older adults especially vulnerable to therapeutic misconception and researcher role conflict and offers practical…

Innovations in research ethics governance in humanitarian settings.

PubMed

Schopper, Doris; Dawson, Angus; Upshur, Ross; Ahmad, Aasim; Jesani, Amar; Ravinetto, Raffaella; Segelid, Michael J; Sheel, Sunita; Singh, Jerome

2015-02-26

Médecins Sans Frontières (MSF) is one of the world's leading humanitarian medical organizations. The increased emphasis in MSF on research led to the creation of an ethics review board (ERB) in 2001. The ERB has encouraged innovation in the review of proposals and the interaction between the ERB and the organization. This has led to some of the advances in ethics governance described in this paper. We first update our previous work from 2009 describing ERB performance and then highlight five innovative practices: • A new framework to guide ethics review • The introduction of a policy exempting a posteriori analysis of routinely collected data • The preapproval of "emergency" protocols • General ethical approval of "routine surveys" • Evaluating the impact of approved studies. The new framework encourages a conversation about ethical issues, rather than imposing quasi-legalistic rules, is more engaged with the specific MSF research context and gives greater prominence to certain values and principles. Some of the innovations implemented by the ERB, such as review exemption or approval of generic protocols, may run counter to many standard operating procedures. We argue that much standard practice in research ethics review ought to be open to challenge and revision. Continued interaction between MSF researchers and independent ERB members has allowed for progressive innovations based on a trustful and respectful partnership between the ERB and the researchers. In the future, three areas merit particular attention. First, the impact of the new framework should be assessed. Second, the impact of research needs to be defined more precisely as a first step towards being meaningfully assessed, including changes of impact over time. Finally, the dialogue between the MSF ERB and the ethics committees in the study countries should be enhanced. We hope that the innovations in research ethics governance described may be relevant for other organisations carrying out research in fragile contexts and for ethics committees reviewing such research.

Confidentiality in participatory research: Challenges from one study.

PubMed

Petrova, Elmira; Dewing, Jan; Camilleri, Michelle

2016-06-01

This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study. © The Author(s) 2014.

Stem cell terminology: practical, theological and ethical implications.

PubMed

Shanner, Laura

2002-01-01

Stem cell policy discussions frequently confuse embryonic and fetal sources of stem cells, and label untested, non-reproductive cloning as "therapeutic." Such misnomers distract attention from significant practical and ethical implications: accelerated research agendas tend to be supported at the expense of physical risks to women, theological implications in a multi-faith community, informed consent for participation in research, and treatment decisions altered by unrealistic expectations.

Ways of thinking about and teaching ethical problem solving: microethics and macroethics in engineering.

PubMed

Herkert, Joseph R

2005-07-01

Engineering ethics entails three frames of reference: individual, professional, and social. "Microethics" considers individuals and internal relations of the engineering profession; "macroethics" applies to the collective social responsibility of the profession and to societal decisions about technology. Most research and teaching in engineering ethics, including online resources, has had a "micro" focus. Mechanisms for incorporating macroethical perspectives include: integrating engineering ethics and science, technology and society (STS); closer integration of engineering ethics and computer ethics; and consideration of the influence of professional engineering societies and corporate social responsibility programs on ethical engineering practice. Integrating macroethical issues and concerns in engineering ethics involves broadening the context of ethical problem solving. This in turn implies: developing courses emphasizing both micro and macro perspectives, providing faculty development that includes training in both STS and practical ethics; and revision of curriculum materials, including online resources. Multidisciplinary collaboration is recommended 1) to create online case studies emphasizing ethical decision making in individual, professional, and societal contexts; 2) to leverage existing online computer ethics resources with relevance to engineering education and practice; and 3) to create transparent linkages between public policy positions advocated by professional societies and codes of ethics.

Undergraduate research involving human subjects should not be granted ethical approval unless it is likely to be of publishable quality.

PubMed

Gallagher, Cathal T; McDonald, Lisa J; McCormack, Niamh P

2014-06-01

Small-scale research projects involving human subjects have been identified as being effective in developing critical appraisal skills in undergraduate students. In deciding whether to grant ethical approval to such projects, university research ethics committees must weigh the benefits of the research against the risk of harm or discomfort to the participants. As the learning objectives associated with student research can be met without the need for human subjects, the benefit associated with training new healthcare professionals cannot, in itself, justify such risks. The outputs of research must be shared with the wider scientific community if it is to influence future practice. Our survey of 19 UK universities indicates that undergraduate dissertations associated with the disciplines of medicine, dentistry and pharmacy are not routinely retained in their library catalogues, thus closing a major avenue to the dissemination of their findings. If such research is unlikely to be published in a peer-reviewed journal, presented at a conference, or otherwise made available to other researchers, then the risks of harm, discomfort or inconvenience to participants are unlikely to be offset by societal benefits. Ethics committees should be satisfied that undergraduate research will be funnelled into further research that is likely to inform clinical practice before granting ethical approval.

Neuroethics and fMRI: Mapping a Fledgling Relationship

PubMed Central

Garnett, Alex; Whiteley, Louise; Piwowar, Heather; Rasmussen, Edie; Illes, Judy

2011-01-01

Human functional magnetic resonance imaging (fMRI) informs the understanding of the neural basis of mental function and is a key domain of ethical enquiry. It raises questions about the practice and implications of research, and reflexively informs ethics through the empirical investigation of moral judgments. It is at the centre of debate surrounding the importance of neuroscience findings for concepts such as personhood and free will, and the extent of their practical consequences. Here, we map the landscape of fMRI and neuroethics, using citation analysis to uncover salient topics. We find that this landscape is sparsely populated: despite previous calls for debate, there are few articles that discuss both fMRI and ethical, legal, or social implications (ELSI), and even fewer direct citations between the two literatures. Recognizing that practical barriers exist to integrating ELSI discussion into the research literature, we argue nonetheless that the ethical challenges of fMRI, and controversy over its conceptual and practical implications, make this essential. PMID:21526115

Beyond a code of ethics: phenomenological ethics for everyday practice.

PubMed

Greenfield, Bruce; Jensen, Gail M

2010-06-01

Physical therapy, like all health-care professions, governs itself through a code of ethics that defines its obligations of professional behaviours. The code of ethics provides professions with a consistent and common moral language and principled guidelines for ethical actions. Yet, and as argued in this paper, professional codes of ethics have limits applied to ethical decision-making in the presence of ethical dilemmas. Part of the limitations of the codes of ethics is that there is no particular hierarchy of principles that govern in all situations. Instead, the exigencies of clinical practice, the particularities of individual patient's illness experiences and the transformative nature of chronic illnesses and disabilities often obscure the ethical concerns and issues embedded in concrete situations. Consistent with models of expert practice, and with contemporary models of patient-centred care, we advocate and describe in this paper a type of interpretative and narrative approach to moral practice and ethical decision-making based on phenomenology. The tools of phenomenology that are well defined in research are applied and examined in a case that illustrates their use in uncovering the values and ethical concerns of a patient. Based on the deconstruction of this case on a phenomenologist approach, we illustrate how such approaches for ethical understanding can help assist clinicians and educators in applying principles within the context and needs of each patient. (c) 2010 John Wiley & Sons, Ltd.

Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

PubMed Central

Cordner, Alissa; Ciplet, David; Brown, Phil; Morello-Frosch, Rachel

2012-01-01

Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others’ research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars. PMID:22690133

Ethics Reporting in Biospecimen and Genetic Research: Current Practice and Suggestions for Changes

PubMed Central

Chin, William Wei Lim; Wieschowski, Susanne; Prokein, Jana; Illig, Thomas

2016-01-01

Modern approaches for research with human biospecimens employ a variety of substantially different types of ethics approval and informed consent. In most cases, standard ethics reporting such as “consent and approval was obtained” is no longer meaningful. A structured analysis of 120 biospecimen studies recently published in top journals revealed that more than 85% reported on consent and approval, but in more than 90% of cases, this reporting was insufficient and thus potentially misleading. Editorial policies, reporting guidelines, and material transfer agreements should include recommendations for meaningful ethics reporting in biospecimen research. Meaningful ethics reporting is possible without higher word counts and could support public trust as well as networked research. PMID:27483445

Ethical Challenges in Promoting the Implementation of Preventive Interventions: Report of the SPR Task Force.

PubMed

Leadbeater, Bonnie J; Dishion, Tom; Sandler, Irwin; Bradshaw, Catherine P; Dodge, Kenneth; Gottfredson, Denise; Graham, Phillip W; Lindstrom Johnson, Sarah; Maldonado-Molina, Mildred M; Mauricio, Anne M; Smith, Emilie Phillips

2018-06-23

Prevention science researchers and practitioners are increasingly engaged in a wide range of activities and roles to promote evidence-based prevention practices in the community. Ethical concerns invariably arise in these activities and roles that may not be explicitly addressed by university or professional guidelines for ethical conduct. In 2015, the Society for Prevention Research (SPR) Board of Directors commissioned Irwin Sandler and Tom Dishion to organize a series of roundtables and establish a task force to identify salient ethical issues encountered by prevention scientists and community-based practitioners as they collaborate to implement evidence-based prevention practices. This article documents the process and findings of the SPR Ethics Task Force and aims to inform continued efforts to articulate ethical practice. Specifically, the SPR membership and task force identified prevention activities that commonly stemmed from implementation and scale-up efforts. This article presents examples that illustrate typical ethical dilemmas. We present principles and concepts that can be used to frame the discussion of ethical concerns that may be encountered in implementation and scale-up efforts. We summarize value statements that stemmed from our discussion. We also conclude that the field of prevention science in general would benefit from standards and guidelines to promote ethical behavior and social justice in the process of implementing evidence-based prevention practices in community settings. It is our hope that this article serves as an educational resource for students, investigators, and Human Subjects Review Board members regarding some of the complexity of issues of fairness, equality, diversity, and personal rights for implementation of preventive interventions.

Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

PubMed Central

Cheah, Phaik Yeong; Denny, Spencer; Jao, Irene; Marsh, Vicki; Merson, Laura; Shah More, Neena; Nhan, Le Nguyen Thanh; Osrin, David; Tangseefa, Decha; Wassenaar, Douglas; Parker, Michael

2015-01-01

Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust. PMID:26297751

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide

PubMed Central

Wolf, Susan M.; Burke, Wylie; Koenig, Barbara A.

2015-01-01

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation. PMID:26479558

Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification.

PubMed

Yonas, Michael A; Jaime, Maria Catrina; Barone, Jean; Valenti, Shannon; Documét, Patricia; Ryan, Christopher M; Miller, Elizabeth

2016-04-01

This report describes the development and implementation of a tailored research ethics training for academic investigators and community research partners (CRP). The Community Partnered Research Ethics Training (CPRET) and Certification is a free and publicly available model and resource created by a university and community partnership to ensure that traditional and non-traditional research partners may study, define, and apply principles of human subjects' research. To date, seven academic and 34 CRP teams have used this highly interactive, engaging, educational, and relationship building process to learn human subjects' research and be certified by the University of Pittsburgh Institutional Review Board (IRB). This accessible, flexible, and engaging research ethics training process serves as a vehicle to strengthen community and academic partnerships to conduct ethical and culturally sensitive research. © The Author(s) 2016.

Qualitative research with small connected communities: generating new knowledge while upholding research ethics.

PubMed

Damianakis, Thecla; Woodford, Michael R

2012-05-01

Qualitative researchers have a dual mission: to generate knowledge through rigorous research and to uphold ethical standards and principles. Qualitative researchers often conduct studies with small connected communities in which relationships exist among community members. When engaging such communities, researchers might face ethical issues in upholding confidentiality standards while they work to achieve their dual mandate. Qualitative scholars have paid little attention to the ethical challenges that might arise in this context. Drawing on our experiences conducting studies with such communities, we expand the dialogue concerning qualitative research ethics by making explicit conceptual and practical tensions that emerge at various stages of the research process; articulating our respective reflective processes; and exploring issues associated with strategies for upholding confidentiality. We conclude with lessons learned to guide researchers who might face similar challenges.

Ethics and community-based participatory research: perspectives from the field.

PubMed

Bastida, Elena M; Tseng, Tung-Sung; McKeever, Corliss; Jack, Leonard

2010-01-01

Exploring the importance of ethical issues in the conduct of community-based participatory research (CBPR) continues to be an important topic for researchers and practitioners. This article uses the Beyond Sabor Project, a CBPR project implemented in the Lower Rio Grande Valley, as a case example to discuss ethical issues such as the importance of increasing community involvement in research, ensuring that communities benefit from the research, sharing leadership roles, and sensitive issues regarding data collection and sharing. Thereafter, this article concludes with a brief discussion of six principles that can inform the practice of ethical conduct when implementing CBPR studies. This article also lists additional reading resources on the importance of ethics in the conduct of CBPR.

The Principle-Based Method of Practical Ethics.

PubMed

Spielthenner, Georg

2017-09-01

This paper is about the methodology of doing practical ethics. There is a variety of methods employed in ethics. One of them is the principle-based approach, which has an established place in ethical reasoning. In everyday life, we often judge the rightness and wrongness of actions by their conformity to principles, and the appeal to principles plays a significant role in practical ethics, too. In this paper, I try to provide a better understanding of the nature of principle-based reasoning. To accomplish this, I show in the first section that these principles can be applied to cases in a meaningful and sufficiently precise way. The second section discusses the question how relevant applying principles is to the resolution of ethical issues. This depends on their nature. I argue that the principles under consideration in this paper should be interpreted as presumptive principles and I conclude that although they cannot be expected to bear the weight of definitely resolving ethical problems, these principles can nevertheless play a considerable role in ethical research.

The Navy’s Current Ethics Strategy and Potential Methods for Improvement

DTIC Science & Technology

2017-12-01

Navy offers annual ethics training for its service members. The researchers further examine whether ethics training is differs between its diverse...Institute OCS Officer Candidate School ODS Officer Development School OTC Officer Training Command SASC Senate Armed Services Committee SCT... training strategy. The researchers offer some strengths, weaknesses, and best practices from other organizations which could inspire positive change

Internet research and ethics: transformative issues in nursing education research.

PubMed

Mahon, Pamela Young

2014-01-01

As practice in the educational and clinical settings seeks to be evidence based, faculty are increasingly required to conduct research and publish the results to advance the science of our profession. The purpose of this article is to discuss transformative research ethics because Internet use is an increasing component of current research studies. How nurse educators can engage in research-utilizing methodologies inclusive of technology while adhering to ethical standards developed before the advance of the Internet is reviewed. Recommendations are cited to address the new questions that arise at institutional review board meetings resulting from potential ethical implications of using students or research participants in cyber space. © 2014.

Ethics in clinical drug trial research in private practice.

PubMed

Beran, R G; Beran, M E

2006-09-01

Private clinics and clinicians have been involved in clinical drug trials for approximately two decades. This paper reviews the ethical consideration inherent in this process. Involvement of a single community based, private, Australian neurological clinic in the conduct of trials was audited. Changes in ethical considerations were analysed. The clinic previously audited its clinical trial involvement, starting with pharmaceutical company orchestrated trials. These were vetted by hospital based ethics committees (ECs) which then refused to review private research. A private EC accommodating NH & MRC standards was formed to assess private research. Indemnity concerns forced return to institutional ECs with government guaranteed indemnification. Trials evolved to investigator initiated, company sponsored studies thence a company asking the clinic to devise, sponsor and manage a trial. The latter relegated trial co-ordination to the clinic which would control publication thereby creating new ethical standards. Private practice trial involvement evolved from reluctant inclusion to a pivotal role in privately sponsored studies. Access to ECs is government endorsed and publication is independent for investigator-sponsored trials. There has been modification of standard operating procedures and enhanced ethical standards.

Ethics in Field-Based Research: Contractual and Relational Responsibilities.

ERIC Educational Resources Information Center

Brickhouse, Nancy W.

The desire to abolish the gap between research theory and classroom practice has sparked an increasing interest in field-based research among science educators. Although most researchers are aware of the standard meanings of informed consent and confidentiality, and there are some codes of ethical principles published by such groups as the…

Some Ethical Considerations in Astronomy Research and Practice

NASA Astrophysics Data System (ADS)

Koepsell, David

2012-08-01

Research ethics as an applied field has evolved due to a number of contentious and public lapses in ethical judgment over the past hundred years. But the main principles underlying good, ethical behavior in all of the sciences are rooted in what Robert Merton calls the ethos of science. Values and virtues, including the universal nature of its underlying objects, communal nature of scientific research, the necessity for individual disinterestedness on the part of researchers, and science's nature as organized skepticism, provide a foundation for conducting ethical research. Scientific integrity, the relation between basic science and the general public, and the social role of science all argue for adopting virtues, guiding behavior, and pursing science in ways we can now characterize as ethical in themselves. Being a good scientist and doing good science overlaps significantly with being a good person.

Health Research Ethics: Between Ethics Codes and Culture.

PubMed

Gheondea-Eladi, Alexandra

2017-10-01

This article is meant to describe and analyze some of the ethical difficulties encountered in a pilot research on treatment decisions of patients with chronic viral hepatitis C infection in Romania. It departs from an overview of the main ethics codes, and it shows that social health research on patients falls in between institutional codes of ethics. Furthermore, the article moves on to analyze so-called "important moments" of empirical research, such as the implementation of the ethical protocol, dealing with informal payments and with information on shady actions, as well as requests of information from interviewed patients and deciding when and if to breach confidentiality. In an attempt to evaluate the ad hoc solutions found in the field, the concluding remarks discuss these issues at the threshold of theory and practice.

In Defense of the Questionable: Defining the Basis of Research Scientists' Engagement in Questionable Research Practices.

PubMed

Sacco, Donald F; Bruton, Samuel V; Brown, Mitch

2018-02-01

National Institutes of Health principal investigators reported their perceptions of the ethical defensibility, prevalence in their field, and their personal willingness to engage in questionable research practices (QRPs). Using ethical defensibility ratings, an exploratory factor analysis yielded a two-factor solution: behaviors considered unambiguously ethically indefensible and behaviors whose ethical defensibility was more ambiguous. In addition, increasing perceptions that QRPs affect science predicted reduced acceptability of QRPs, whereas increasing beliefs that QRPs are normative or necessary for career success predicted increased acceptability of QRPs. Perceptions that QRPs are risky were unrelated to QRP acceptability but predicted reduced extramural funding (i.e., researchers' lifetime extramural grants and total funding secured). These results identify risk (i.e., beliefs that QRPs are normative to stay competitive in one's field) and protective factors (i.e., beliefs that QRPs have a significant negative impact on society) related to QRP endorsement that could inform educational interventions for training research scientists.

Informed consent in the context of pharmacogenomic research: ethical considerations.

PubMed

Howard, H C; Joly, Y; Avard, D; Laplante, N; Phillips, M; Tardif, J C

2011-06-01

Although the scientific research surrounding pharmacogenomics (PGx) has been relatively plentiful, the ethical research concerning this discipline has developed rather conservatively. Following investigation of the ethical, legal and social issues (ELSI) of PGx research, as well as consulting with key stakeholders, we identified six outstanding ethical issues raised by the informed consent process in PGx research: (1) scope of consent; (2) consent to 'add-on' studies; (3) protection of personal information; (4) commercialization; (5) data sharing; and (6) potential risks stemming from population-based research. In discussing these six areas as well as offering specific considerations, this article offers a solid base from which future practical guidelines for informed consent in PGx research can be constructed. As such, this effort works toward filling the ELSI gap and provides ethical support to the numerous PGx projects undertaken by researchers every year.

The Dawning of the Ethics of Environmental Robots.

PubMed

van Wynsberghe, Aimee; Donhauser, Justin

2017-10-23

Environmental scientists and engineers have been exploring research and monitoring applications of robotics, as well as exploring ways of integrating robotics into ecosystems to aid in responses to accelerating environmental, climatic, and biodiversity changes. These emerging applications of robots and other autonomous technologies present novel ethical and practical challenges. Yet, the critical applications of robots for environmental research, engineering, protection and remediation have received next to no attention in the ethics of robotics literature to date. This paper seeks to fill that void, and promote the study of environmental robotics. It provides key resources for further critical examination of the issues environmental robots present by explaining and differentiating the sorts of environmental robotics that exist to date and identifying unique conceptual, ethical, and practical issues they present.

Towards the responsible conduct of scientific research: is ethics education enough?

PubMed Central

Novossiolova, Tatyana; Sture, Judi

2012-01-01

Much of the discourse on ‘beyond the laboratory door’ biosecurity to date has focused on the need to raise awareness among the scientific community of the risks posed by the rapid advancement of biotechnology in recent decades. While education is undoubtedly important, a growing body of evidence suggests that ethics education does not necessarily translate into ethical behaviour. This trend has already been reported in clinical settings, where research has highlighted doctors’ own reports of ethically dubious practices and challenges when confronted with moral dilemmas in their everyday work. The purpose of this paper is to critically evaluate the practical value of ethics education and show why it is an essential, although insufficient, measure for promoting a culture of responsible conduct of research. We conclude by highlighting the importance of continuing professional development as a way of maintaining life scientists’ engagement with biosecurity issues and supporting them in active roles in the effective implementation of the Biological and Toxin Weapons Convention (BWC). PMID:22606762

Beyond procedural ethics: foregrounding questions of justice in global health research ethics training for students.

PubMed

Hunt, Matthew R; Godard, Beatrice

2013-07-01

Interest in global health is growing among students across many disciplines and fields of study. In response, an increasing number of academic programmes integrate and promote opportunities for international research, service or clinical placements. These activities raise a range of ethical issues and are associated with important training needs for those who participate. In this paper, we focus on research fieldwork conducted in lower income nations by students from more affluent countries and the ethics preparation they would benefit from receiving prior to embarking on these projects. Global health research is closely associated with questions of justice and equity that extend beyond concerns of procedural ethics. Research takes place in and is shaped by matrices of political, social and cultural contexts and concerns. These realities warrant analysis and discussion during research ethics training. Training activities present an opportunity to encourage students to link global health research to questions of global justice, account for issues of justice in planning their own research, and prepare for 'ethics-in-practice' issues when conducting research in contexts of widespread inequality. Sustained engagement with questions of justice and equity during research ethics training will help support students for involvement in global health research.

Ethical Considerations for Cognitive-Behavioral Therapists in Psychotherapy Research Trials

ERIC Educational Resources Information Center

Haman, Kirsten L.; Hollon, Steven D.

2009-01-01

Psychotherapy research studies, which balance the pursuit of knowledge with the provision of treatment, can place unique demands on clinicians, patients, and research staff. However, the literature on ethical considerations in psychotherapy trials is minimal. The current paper depicts CBT community standards of practice in the context of two…

An Ethical Frame for Research with Immigrant Families

ERIC Educational Resources Information Center

Nguyen, Jacqueline; Hernández, María G.; Saetermoe, Carrie L.; Suárez-Orozco, Carola

2013-01-01

In this introduction, the editors give an overview of the ways the volume addresses the growing individual and institutional calls for increased clarity and rigor in methodological, ethical, and practical research policies and guidelines for conducting research with immigrant individuals, families, and communities. In addition to summarizing the…

Research Integrity and Research Ethics in Professional Codes of Ethics: Survey of Terminology Used by Professional Organizations across Research Disciplines

PubMed Central

Komić, Dubravka; Marušić, Stjepan Ljudevit; Marušić, Ana

2015-01-01

Professional codes of ethics are social contracts among members of a professional group, which aim to instigate, encourage and nurture ethical behaviour and prevent professional misconduct, including research and publication. Despite the existence of codes of ethics, research misconduct remains a serious problem. A survey of codes of ethics from 795 professional organizations from the Illinois Institute of Technology’s Codes of Ethics Collection showed that 182 of them (23%) used research integrity and research ethics terminology in their codes, with differences across disciplines: while the terminology was common in professional organizations in social sciences (82%), mental health (71%), sciences (61%), other organizations had no statements (construction trades, fraternal social organizations, real estate) or a few of them (management, media, engineering). A subsample of 158 professional organizations we judged to be directly involved in research significantly more often had statements on research integrity/ethics terminology than the whole sample: an average of 10.4% of organizations with a statement (95% CI = 10.4-23-5%) on any of the 27 research integrity/ethics terms compared to 3.3% (95% CI = 2.1–4.6%), respectively (P<0.001). Overall, 62% of all statements addressing research integrity/ethics concepts used prescriptive language in describing the standard of practice. Professional organizations should define research integrity and research ethics issues in their ethics codes and collaborate within and across disciplines to adequately address responsible conduct of research and meet contemporary needs of their communities. PMID:26192805

What makes public health studies ethical? Dissolving the boundary between research and practice.

PubMed

Willison, Donald J; Ondrusek, Nancy; Dawson, Angus; Emerson, Claudia; Ferris, Lorraine E; Saginur, Raphael; Sampson, Heather; Upshur, Ross

2014-08-08

The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary - whether on grounds of primary purpose, temporality, underlying legal authority, departure from usual practice, or direct benefits to participants - have been unsatisfactory.Public Health Ontario has eschewed this distinction between research and other evaluative activities, choosing to adopt a common framework and process to guide ethical reflection on all public health evaluative projects throughout their lifecycle - from initial planning through to knowledge exchange. The Public Health Ontario framework was developed by a working group of public health and ethics professionals and scholars, in consultation with individuals representing a wide range of public health roles. The first part of the framework interprets the existing Canadian research ethics policy statement (commonly known as the TCPS 2) through a public health lens. The second part consists of ten questions that guide the investigator in the application of the core ethical principles to public health initiatives.The framework is intended for use by those designing and executing public health evaluations, as well as those charged with ethics review of projects. The goal is to move toward a culture of ethical integrity among investigators, reviewers and decision-makers, rather than mere compliance with rules. The framework is consonant with the perspective of the learning organization and is generalizable to other public health organizations, to health services organizations, and beyond. Public Health Ontario has developed an ethics framework that is applicable to any evidence-generating activity, regardless of whether it is labelled research. While developed in a public health context, it is readily adaptable to other health services organizations and beyond.

Ethics, government and sexual health: insights from Foucault.

PubMed

Winch, Sarah

2005-03-01

The work of Michel Foucault, the French philosopher who was interested in power relationships, has resonated with many nurses who seek a radically analytical view of nursing practice. The purpose of this article is to explore 'ethics' through a Foucauldian lens, in a conceptual and methodological sense. The intention is to provide a useful framework that will help researchers critically to explore aspects of nursing practice that relate to the construction of the self, morality and identity, be that nurse or patient related. The fundamentals of the research method of genealogy and the methods of ethics are reviewed. Using an example taken from the sexual health practice area, advice is given on how to structure data collection, incorporate interview data, avoid discourse determinism and measure resistance.

Educating for ethical leadership through web-based coaching.

PubMed

Eide, Tom; Dulmen, Sandra van; Eide, Hilde

2016-12-01

Ethical leadership is important for developing ethical healthcare practice. However, there is little research-based knowledge on how to stimulate and educate for ethical leadership. The aim was to develop and investigate the feasibility of a 6-week web-based, ethical leadership educational programme and learn from participants' experience. Training programme and research design: A training programme was developed consisting of (1) a practice part, where the participating middle managers developed and ran an ethics project in their own departments aiming at enhancing the ethical mindfulness of the organizational culture, and (2) a web-based reflection part, including online reflections and coaching while executing the ethics project. Focus group interviews were used to explore the participants' experiences with and the feasibility of the training. Participants and research context: Nine middle managers were recruited from a part-time master's programme in leadership in Oslo, Norway. The research context was the participating leaders' work situation during the 6 weeks of training. Ethical considerations: Participation was voluntary, data anonymized and the confidentiality of the participating leaders/students and their institutions maintained. No patient or medical information was involved. Eight of the nine recruited leaders completed the programme. They evaluated the training programme as efficient and supportive, with the written, situational feedback/coaching as the most important element, enhancing reflection and motivation, counteracting a feeling of loneliness and promoting the execution of change. The findings seem consistent with the basic assumptions behind the educational design, based partly on e-health research, feedback studies and organizational ethics methodology, partly on theories on workplace learning, reflection, recognition and motivation. The training programme seems feasible. It should be adjusted according to participants' proposals and tested further in a large-scale study.

Ethics challenges and guidance related to research involving adolescent post-abortion care: a scoping review.

PubMed

Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A

2018-05-02

An increase in post abortion care (PAC) research with adolescents, particularly in low- and middle-income countries, has brought to attention several associated research ethics challenges. In order to better understand the ethics context of PAC research with adolescents, we conducted a scoping review of published literature. Following a systematic search of PubMed, HINARI, and Google Scholar, we analysed articles meeting inclusion criteria to determine common themes across both the ethical challenges related to PAC research with adolescents and any available guidance on the identified challenges. The literature search identified an initial 3321 records of which 14 were included in analysis following screening. Several ethical challenges stem from abortion being a controversial, sensitive, and stigmatized topic in many settings. Ethical dilemmas experienced by researchers conducting adolescent PAC research included: difficulties in convincing local health providers to permit PAC research; challenges in recruiting and seeking consent due to sensitivity of the subject; effectively protecting confidentiality; managing negative effects of interventions; creating a non-prejudicial atmosphere for research; managing emotional issues among adolescents; and dealing with uncertainty regarding the role of researchers when observing unethical health care practices. Suggested strategies for addressing some of these challenges include: using several sources to recruit study participants, using research to facilitate dialogue on abortion, briefing health workers on any observed unethical practices after data collection, fostering a comprehensive understanding of contextual norms and values, selecting staff with experience working with study populations, and avoiding collection of personal identifiers. Addressing ethical challenges that researchers face when conducting PAC research with adolescents requires guidance at the individual, institutional, community, and international levels. Overall, despite the documentation of challenges in the published literature, guidance on handling several of these ethics challenges is sparse. We encourage further research to clarify the identified challenges and support the development of formal guidance in this area.

Practicing Research Ethics: Private-Sector Physicians & Pharmaceutical Clinical Trials

PubMed Central

2008-01-01

This paper focuses on constructions of research ethics by primary care physicians in the USA as they engage in contract research for the pharmaceutical industry. Drawing first upon historical studies of physicians as investigators and then upon 12 months of qualitative fieldwork in the South Western US, this paper analyzes the shifting, contextualized ethics that shape physicians’ relationships with patients/subjects and pharmaceutical companies. Just as physicians followed professional codes of ethics prior to the codification of acceptable research conduct in the 1980s, physicians today continue to develop tacit systems of research ethics. This paper argues that private-sector physicians primarily conceptualize their ethical conduct in relation to the pharmaceutical companies hiring them, not to human subjects they enroll in clinical trials. This is not to say that these physicians do not follow the formal U.S. regulation to protect human subjects, but rather that their financial relationships with the pharmaceutical industry have a greater influence on their identities as researchers and on their constructions of their ethical responsibilities. PMID:18353515

Practicing research ethics: private-sector physicians & pharmaceutical clinical trials.

PubMed

Fisher, Jill A

2008-06-01

This paper focuses on constructions of research ethics by primary care physicians in the USA as they engage in contract research for the pharmaceutical industry. Drawing first on historical studies of physicians as investigators and then on 12 months of qualitative fieldwork in the Southwestern US, this paper analyzes the shifting, contextualized ethics that shape physicians' relationships with patients/subjects and pharmaceutical companies. Just as physicians followed professional codes of ethics prior to the codification of acceptable research conduct in the 1980s, physicians today continue to develop tacit systems of research ethics. This paper argues that private-sector physicians primarily conceptualize their ethical conduct in relation to the pharmaceutical companies hiring them, not to human subjects they enroll in clinical trials. This is not to say that these physicians do not follow the formal U.S. regulation to protect human subjects, but rather that their financial relationships with the pharmaceutical industry have a greater influence on their identities as researchers and on their constructions of their ethical responsibilities.

Legal and ethical issues in research

PubMed Central

Yip, Camille; Han, Nian-Lin Reena; Sng, Ban Leong

2016-01-01

Legal and ethical issues form an important component of modern research, related to the subject and researcher. This article seeks to briefly review the various international guidelines and regulations that exist on issues related to informed consent, confidentiality, providing incentives and various forms of research misconduct. Relevant original publications (The Declaration of Helsinki, Belmont Report, Council for International Organisations of Medical Sciences/World Health Organisation International Guidelines for Biomedical Research Involving Human Subjects, World Association of Medical Editors Recommendations on Publication Ethics Policies, International Committee of Medical Journal Editors, CoSE White Paper, International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use-Good Clinical Practice) form the literature that are relevant to the ethical and legal aspects of conducting research that researchers should abide by when conducting translational and clinical research. Researchers should note the major international guidelines and regional differences in legislation. Hence, specific ethical advice should be sought at local Ethics Review Committees. PMID:27729698

The importance of formative assessment in science and engineering ethics education: some evidence and practical advice.

PubMed

Keefer, Matthew W; Wilson, Sara E; Dankowicz, Harry; Loui, Michael C

2014-03-01

Recent research in ethics education shows a potentially problematic variation in content, curricular materials, and instruction. While ethics instruction is now widespread, studies have identified significant variation in both the goals and methods of ethics education, leaving researchers to conclude that many approaches may be inappropriately paired with goals that are unachievable. This paper speaks to these concerns by demonstrating the importance of aligning classroom-based assessments to clear ethical learning objectives in order to help students and instructors track their progress toward meeting those objectives. Two studies at two different universities demonstrate the usefulness of classroom-based, formative assessments for improving the quality of students' case responses in computational modeling and research ethics.

Clinical ethics in Croatia: an overview of education, services and research (an appeal for change).

PubMed

Turina, Iva Sorta-Bilajac; Brkljacić, Morana; Cengić, Tomislav; Ratz, Aleksandar; Rotim, Ante; Kes, Vanja Basić

2014-06-01

The aim of this paper is to delineate current position of clinical ethics in the Croatian healthcare system by analyzing the following: representation of clinical ethics contents in the curricula of medical and associated schools; composition and role of clinical ethics consultations; and establishment of an ethical/legal framework for the conduct of research. Curriculum investigation, literature review, arid analysis of the Croatian Act on the Protection of Patients' Rights were performed. The contents of clinical ethics are offered through 63 obligatory and elective subjects at 12 institutions. It is wrongly placed either too early or too late within the curriculum. Continuity at all levels of health professional education is needed. Croatian experience with clinical ethics consultations is shaped only by ethics committees. Problematic is the review of research protocols indicated as their main activity. Inclusion of team and individual consultations would increase the availability and facilitate the usage of ethics support services. The Act on the Protection of Patients' Rights is based on the principles of humanity and availability, ensuring the right to protection when participating in clinical trials. Unfortunately, the outdated paradigm of paternalistic medicine aggravates the respect for patients' rights in cure, care and research. A shift towards the patient/person-centered healthcare system would put the Act into everyday practice. Although clinical ethics has entered the Croatian healthcare system in a formal and practical way, the authors wish to emphasize the need to approach the European and other international standards regarding the recent Croatian accession to the European Union.

The is and ought of the Ethics of Neuroenhancement: Mind the Gap.

PubMed

Forlini, Cynthia; Hall, Wayne

2015-01-01

Ethical perspectives on the use of stimulants to enhance human cognitive performance (neuroenhancement) are polarized between conservative and liberal theories offering opposing advice on whether individuals have a right to use neuroenhancers and what the social outcomes of neuroenhancement might be. Meanwhile, empirical evidence shows modest prevalence and guarded public attitudes toward the neuroenhancement use of stimulants. In this Perspective, we argue that the dissonance between the prescriptions of ethical theories (what ought to be) and empirical evidence (what is) has impaired our understanding of neuroenhancement practices. This dissonance is a result of three common errors in research on the ethics of neuroenhancement: (1) expecting that public perspectives will conform to a prescriptive ethical framework; (2) ignoring the socio-economic infrastructures that influence individuals' decisions on whether or not to use neuroenhancement; and (3) overlooking conflicts between fundamental ethical values namely, safety of neuroenhancement and autonomy. We argue that in order to understand neuroenhancement practices it is essential to recognize which values affect individual decisions to use or refuse to use neuroenhancement. Future research on the ethics of neuroenhancement should assess the morally significant values for stakeholders. This will fill the gap between what ought to be done and what is done with an improved understanding of what can be done within a particular context. Clarifying conflicts between competing moral values is critical in conducting research on the efficacy of substances putatively used for neuroenhancement and also on neuroenhancement practices within academic, professional and social environments.

A Scoping Study on the Ethics of Health Systems Research.

PubMed

Bachani, Abdulgafoor M; Rattani, Abbas; Hyder, Adnan A

2016-12-01

Currently, health systems research (HSR) is reviewed by the same ethical standards as clinical research, which has recently been argued in the literature to be an inappropriate standard of evaluation. The issues unique to HSR warrant a different review by research ethics committees (RECs), as it does not impose the same risks to study participants as other types of clinical or public health research. However, there are limited tools and supporting documents that clarify the ethical considerations. Therefore, there is a need for additional reflection around ethical review of HSR and their consideration by RECs. The purpose of this paper is to review, understand, and synthesize the current state of literature and practice to inform these deliberations and the larger discourse on ethics review guidelines for HSR. This paper presents a review of the literature on ethics of HSR in the biomedical, public health, and implementation research to identify ethical considerations specific to HSR; and to identify examples of commonly available guidance and/or tools for the ethical review of HSR studies. Fifteen articles were identified on HSR ethics issues, and forty-two international academic institutions were contacted (of the responses (n=29), no institution had special ethical guidelines for reviewing HSR) about their HSR ethics review guidelines. There appears to be a clear gap in the current health research ethics discourse around health systems research ethics. This review serves as a first step (to better understand the current status) towards a larger dialogue on the topic. © 2016 John Wiley & Sons Ltd.

From painful busyness to emotional immunization: Nurses' experiences of ethical challenges.

PubMed

Storaker, Anne; Nåden, Dagfinn; Sæteren, Berit

2017-08-01

The professional values presented in ethical guidelines of the Norwegian Nurses Organisation and International Council of Nurses describe nurses' professional ethics and the obligations that pertain to good nursing practice. The foundation of all nursing shall be respect for life and the inherent dignity of the individual. Research proposes that nurses lack insight in ethical competence and that ethical issues are rarely discussed on the wards. Furthermore, research has for some time confirmed that nurses experience moral distress in their daily work and that this has become a major problem for the nursing profession. The purpose of this article is to obtain a deeper understanding of the ethical challenges that nurses face in daily practice. The chosen research questions are "What ethical challenges do nurses experience in their daily practice?" We conducted a qualitative interview study using a hermeneutical approach to analyzing data describing nurses' experiences. Ethical considerations: The Norwegian Social Science Data services approved the study. Furthermore, the head of the hospital gave permission to conduct the investigation. The requirement of anonymity and proper data storage in accordance with the World Medical Association Declaration of Helsinki was met. The context for the study comprised three different clinical wards at a university hospital in Norway. Nine qualified nurses were interviewed. The results were obtained through a systematic development beginning with the discovery of busyness as a painful phenomenon that can lead to conflicts in terms of ethical values. Furthermore, the consequences compromising professional principles in nursing care emerged and ended in moral blindness and emotional immunization of the healthcare providers. Emotional immunization occurred as a new dimension involving moral blindness and immunity in relation to being emotionally touched.

Justice in human research ethics. A conceptual and practical guide.

PubMed

Pieper, Ian; Thomson, Colin J H

2013-03-01

One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a great deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice--hether distributive or commutative--and what counts as a just distribution or exchange--are given different weight and meanings by different people. In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished, and the manner in which they can be applied meaningfully in the ethical review of all human research is identified. We also explain the way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statement on Ethical Conduct in Human Research (2007). The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. We provide guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. We also provide practical guidance to researches on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement.

Academic Research Record-Keeping: Best Practices for Individuals, Group Leaders, and Institutions

PubMed Central

Schreier, Alan A.; Wilson, Kenneth; Resnik, David

2014-01-01

During the last half of the 20th century, social and technological changes in academic research groups have challenged traditional research record-keeping practices, making them either insufficient or obsolete. New practices have developed but standards (best practices) are still evolving. Based on the authors’ review and analysis of a number of sources, they present a set of systematically compiled best practices for research record-keeping for academic research groups. These best practices were developed as an adjunct to a research project on research ethics aimed at examining the actual research record-keeping practices of active academic scientists and their impact on research misconduct inquiries. The best practices differentiate and provide separate standards for three different levels within the university: the individual researcher, the research group leader, and the department/institution. They were developed using a combination of literature reviews, surveys of university integrity officials, focus groups of active researchers, and inspection of university policies on research record-keeping. The authors believe these best practices constitute a “snapshot” of the current normative standards for research records within the academic research community. They are offered as ethical and practical guidelines subject to continuing evolution and not as absolute rules. They may be especially useful in training the next generation of researchers. PMID:16377817

MOMENTS OF UNCERTAINTY: ETHICAL CONSIDERATIONS AND EMERGING CONTAMINANTS

PubMed Central

Cordner, Alissa; Brown, Phil

2013-01-01

Science on emerging environmental health threats involves numerous ethical concerns related to scientific uncertainty about conducting, interpreting, communicating, and acting upon research findings, but the connections between ethical decision making and scientific uncertainty are under-studied in sociology. Under conditions of scientific uncertainty, researcher conduct is not fully prescribed by formal ethical codes of conduct, increasing the importance of ethical reflection by researchers, conflicts over research conduct, and reliance on informal ethical standards. This paper draws on in-depth interviews with scientists, regulators, activists, industry representatives, and fire safety experts to explore ethical considerations of moments of uncertainty using a case study of flame retardants, chemicals widely used in consumer products with potential negative health and environmental impacts. We focus on the uncertainty that arises in measuring people’s exposure to these chemicals through testing of their personal environments or bodies. We identify four sources of ethical concerns relevant to scientific uncertainty: 1) choosing research questions or methods, 2) interpreting scientific results, 3) communicating results to multiple publics, and 4) applying results for policy-making. This research offers lessons about professional conduct under conditions of uncertainty, ethical research practice, democratization of scientific knowledge, and science’s impact on policy. PMID:24249964

Complementary and alternative medicine: the challenges of ethical justification. A philosophical analysis and evaluation of ethical reasons for the offer, use and promotion of complementary and alternative medicine.

PubMed

Mertz, Marcel

2007-09-01

With the prevalence of complementary and alternative medicine (CAM) increasing in western societies, questions of the ethical justification of these alternative health care approaches and practices have to be addressed. In order to evaluate philosophical reasoning on this subject, it is of paramount importance to identify and analyse possible arguments for the ethical justification of CAM considering contemporary biomedical ethics as well as more fundamental philosophical aspects. Moreover, it is vital to provide adequate analytical instruments for this task, such as separating 'CAM as belief system' and 'CAM as practice'. Findings show that beneficence and non-maleficence are central issues for an ethical justification of CAM as practice, while freedom of thought and religion are central to CAM as belief system. Many justification strategies have limitations and qualifications that have to be taken into account. Singularly descriptive premises in an argument often prove to be more problematic than universal ethical principles. Thus, non-ethical issues related to a general philosophical underpinning--e.g. epistemology, semantics, and ontology--are highly relevant for determining a justification strategy, especially when strong metaphysical assumptions are involved. Even if some values are shared with traditional biomedicine, axiological differences have to be considered as well. Further research should be done about specific CAM positions. These could be combined with applied qualitative social research methods.

Publication ethics from the ground up.

PubMed

DeTora, Lisa; Foster, Cate; Nori, Mukund; Simcoe, Donna; Skobe, Catherine; Toroser, Dikran

2018-02-01

It is relatively easy to begin policy documents with a general assertion that ethics will be followed. Less obvious is how to ensure that day-to-day activities are consonant with ethical standards. We suggest that using day-to-day publication activities as the driver for building policies and procedures can promote ethical practices from the ground up. Although basic principles of ethical publication practice may seem straightforward to some, for others this information may require explanation, interpretation and context. Effective policy development includes big-picture items as well as more day-to-day tactical responsibilities such as those discussed below. Research questions, disciplinary practices, applications and team structures may vary. Thus, no single publication plan or policy solution is right for all teams. It is up to team members to review guidelines for best practices and find the optimal implementation for their situations. Experts in publication management, planning and writing can help large teams manage publication activities. These experts have an obligation to maintain and enhance their skills continually. A strong acumen in publication best practices will allow these publication professionals to better address any possible ethical dilemmas in the future. © 2018 The Authors. International Journal of Clinical Practice Published by John Wiley & Sons Ltd.

Ethical considerations when employing fake identities in online social networks for research.

PubMed

Elovici, Yuval; Fire, Michael; Herzberg, Amir; Shulman, Haya

2014-12-01

Online social networks (OSNs) have rapidly become a prominent and widely used service, offering a wealth of personal and sensitive information with significant security and privacy implications. Hence, OSNs are also an important--and popular--subject for research. To perform research based on real-life evidence, however, researchers may need to access OSN data, such as texts and files uploaded by users and connections among users. This raises significant ethical problems. Currently, there are no clear ethical guidelines, and researchers may end up (unintentionally) performing ethically questionable research, sometimes even when more ethical research alternatives exist. For example, several studies have employed "fake identities" to collect data from OSNs, but fake identities may be used for attacks and are considered a security issue. Is it legitimate to use fake identities for studying OSNs or for collecting OSN data for research? We present a taxonomy of the ethical challenges facing researchers of OSNs and compare different approaches. We demonstrate how ethical considerations have been taken into account in previous studies that used fake identities. In addition, several possible approaches are offered to reduce or avoid ethical misconducts. We hope this work will stimulate the development and use of ethical practices and methods in the research of online social networks.

One Chairperson's Experience of Ethical Review: Balancing Principle, Convention, Relationship and Risk in Educational Research

ERIC Educational Resources Information Center

O'Neill, John

2010-01-01

The author's experience of ethical review over six years as an academic member and chairperson of a university human ethics committee has been largely positive and educative. The account brings together archival records and personal experience to create a "transactive" account of the practical experience of doing ethical review in one…

A Randomized Controlled Trial (RCT) to Assess and Improve the Effectiveness of Post-Deployment Screening for Mental Illness

DTIC Science & Technology

2014-09-01

Committee (Ref 187/GEN/10, the King’s College London Psychiatry, Nursing & Midwifery Research Ethics Subcommittee (Ref PNM/10/10/11-112) and the US Army...Ministry of Defence Research Ethics Committee (Ref 187/GEN/1) and the King’s College London Psychiatry, Nursing and Midwifery Research Ethics...increase acceptability of mental health screening programmes in paediatric care [22,23]. Concerns about the practicalities of implementing screening

A Randomized Controlled Trial (RCT) to Assess and Improve the Effectiveness of Post-deployment Screening for Mental Illness

DTIC Science & Technology

2014-03-01

Defence Ethics Committee (Ref 187/GEN/10, the King’s College London Psychiatry, Nursing & Midwifery Research Ethics Subcommittee (Ref PNM/10/10/11-112...March 2011 by The Ministry of Defence Research Ethics Committee (Ref 187/GEN/1) and the King’s College London Psychiatry, Nursing and Midwifery Research...been found to increase acceptability of mental health screening programmes in paediatric care [22,23]. Concerns about the practicalities of

Procedure versus process: ethical paradigms and the conduct of qualitative research

PubMed Central

2012-01-01

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. PMID:23016663

Research and the Ambiguity of Reflexivity and Ethical Practice

ERIC Educational Resources Information Center

Hastings, Wendy

2010-01-01

This paper examines the methodological dilemmas associated with analytical framing as an aspect of the research process. Doing qualitative research potentially changes a researcher--changes their sense of self, who they think they are, who they want to become. The paper examines the ethical dilemma of what that change might mean--for the project,…

A code of ethics for evidence-based research with ancient human remains.

PubMed

Kreissl Lonfat, Bettina M; Kaufmann, Ina Maria; Rühli, Frank

2015-06-01

As clinical research constantly advances and the concept of evolution becomes a strong and influential part of basic medical research, the absence of a discourse that deals with the use of ancient human remains in evidence-based research is becoming unbearable. While topics such as exhibition and excavation of human remains are established ethical fields of discourse, when faced with instrumentalization of ancient human remains for research (i.e., ancient DNA extractions for disease marker analyses) the answers from traditional ethics or even more practical fields of bio-ethics or more specific biomedical ethics are rare to non-existent. The Centre for Evolutionary Medicine at the University of Zurich solved their needs for discursive action through the writing of a self-given code of ethics which was written in dialogue with the researchers at the Institute and was published online in Sept. 2011: http://evolutionäremedizin.ch/coe/. The philosophico-ethical basis for this a code of conduct and ethics and the methods are published in this article. © 2015 Wiley Periodicals, Inc.

BNCI systems as a potential assistive technology: ethical issues and participatory research in the BrainAble project.

PubMed

Carmichael, Clare; Carmichael, Patrick

2014-01-01

This paper highlights aspects related to current research and thinking about ethical issues in relation to Brain Computer Interface (BCI) and Brain-Neuronal Computer Interfaces (BNCI) research through the experience of one particular project, BrainAble, which is exploring and developing the potential of these technologies to enable people with complex disabilities to control computers. It describes how ethical practice has been developed both within the multidisciplinary research team and with participants. The paper presents findings in which participants shared their views of the project prototypes, of the potential of BCI/BNCI systems as an assistive technology, and of their other possible applications. This draws attention to the importance of ethical practice in projects where high expectations of technologies, and representations of "ideal types" of disabled users may reinforce stereotypes or drown out participant "voices". Ethical frameworks for research and development in emergent areas such as BCI/BNCI systems should be based on broad notions of a "duty of care" while being sufficiently flexible that researchers can adapt project procedures according to participant needs. They need to be frequently revisited, not only in the light of experience, but also to ensure they reflect new research findings and ever more complex and powerful technologies.

The ethics of Foucault and Ricoeur: an underrepresented discussion in nursing.

PubMed

Flaming, Don

2006-09-01

Paul Ricoeur and Michel Foucault enjoy a privileged status in nursing academia as two thinkers who influence both nursing research and philosophical explorations of nursing practice. Most nurse authors, however, focus only on the earlier works of these two philosophers and, for example, base qualitative research methodologies on Foucault's genealogy and Ricoeur's hermeneutics. In their later years, both these writers talk more explicitly about being an ethical self. Ideas from their earlier writing is evident in their writing on ethics and both writers could not discuss ethics without also exploring their ideas of the self and the other. I suggest that some of their thoughts on ethics connect with or complement each other quite well. I will first give an overview of Foucault's ethics, self and the other, and then do the same with Ricoeur's thought. In the third part of the paper I will describe how Foucault and Ricoeur complement each other, and conclude the paper by briefly suggesting how these writers influence my own practice as a nurse educator.

Real-time Responsiveness for Ethics Oversight During Disaster Research.

PubMed

Eckenwiler, Lisa; Pringle, John; Boulanger, Renaud; Hunt, Matthew

2015-11-01

Disaster research has grown in scope and frequency. Research in the wake of disasters and during humanitarian crises--particularly in resource-poor settings--is likely to raise profound and unique ethical challenges for local communities, crisis responders, researchers, and research ethics committees (RECs). Given the ethical challenges, many have questioned how best to provide research ethics review and oversight. We contribute to the conversation concerning how best to ensure appropriate ethical oversight in disaster research and argue that ethical disaster research requires of researchers and RECs a particular sort of ongoing, critical engagement which may not be warranted in less exceptional research. We present two cases that typify the concerns disaster researchers and RECs may confront, and elaborate upon what this ongoing engagement might look like--how it might be conceptualized and utilized--using the concept of real-time responsiveness (RTR). The central aim of RTR, understood here as both an ethical ideal and practice, is to lessen the potential for research conducted in the wake of disasters to create, perpetuate, or exacerbate vulnerabilities and contribute to injustices suffered by disaster-affected populations. Well cultivated and deployed, we believe that RTR may enhance the moral capacities of researchers and REC members, and RECs as institutions where moral agency is nurtured and sustained. © 2015 John Wiley & Sons Ltd.

Inter-Philosophies Dialogue: Creating a Paradigm for Global Health Ethics.

PubMed

Benatar, Solomon; Daibes, Ibrahim; Tomsons, Sandra

While debate remains about the definition and goals of work on global health, there is growing agreement that our moral starting point is the reality of unjust inequalities in the distribution of the conditions necessary for human health and well-being. With the growth of multi-jurisdictional and multicultural global health partnerships, the adequacy of the prevailing bioethical paradigm guiding the conduct of global health research and practice is being increasingly challenged. In response to ethical challenges and conflicts confronted by decision-makers in global health research and practice, we propose an innovative methodology that could be developed to bridge the gap between polarized systems of ideas and values (metaphysical, epistemological, moral, and political). Our inter-philosophies methodology provides the potential to construct a new, shared paradigm for global health ethics, thereby increasing the capacity for solidarity and shared decision-making in global health research and practice.

Integrating a Peer-Taught Module on Practical Research Ethics into the Graduate Student Orientation Curriculum

ERIC Educational Resources Information Center

Danowitz, Amy M.; Taylor, Christopher E.

2011-01-01

As active members of the scientific community, graduate students make ethical judgments about the conduct and presentation of their research. Pressures in the research environment often influence these decisions. Because inappropriate decisions can lead to unethical behavior and scientific misconduct, it is important that students understand the…

A Comparative Study on Scientific Misconduct between Korean and Japanese Science Gifted Students

ERIC Educational Resources Information Center

Lee, Jiwon; Kim, Jung Bog; Isozaki, Tetsuo

2017-01-01

The scientific integrity, perceptions of scientific misconduct, and students' needs in the research ethics education of Korean and Japanese gifted students were analyzed to address three questions. First, how well do students practice research ethics in their research? Second, how do students perceive scientists' misconduct? Third, do students…

Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk).

PubMed

Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel

2011-12-01

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.

Medical ethical standards in dermatology: an analytical study of knowledge, attitudes and practices.

PubMed

Mostafa, W Z; Abdel Hay, R M; El Lawindi, M I

2015-01-01

Dermatology practice has not been ethically justified at all times. The objective of the study was to find out dermatologists' knowledge about medical ethics, their attitudes towards regulatory measures and their practices, and to study the different factors influencing the knowledge, the attitude and the practices of dermatologists. This is a cross-sectional comparative study conducted among 214 dermatologists, from five Academic Universities and from participants in two conferences. A 54 items structured anonymous questionnaire was designed to describe the demographical characteristics of the study group as well as their knowledge, attitude and practices regarding the medical ethics standards in clinical and research settings. Five scoring indices were estimated regarding knowledge, attitude and practice. Inferential statistics were used to test differences between groups as indicated. The Student's t-test and analysis of variance were carried out for quantitative variables. The chi-squared test was conducted for qualitative variables. The results were considered statistically significant at a P > 0.05. Analysis of the possible factors having impact on the overall scores revealed that the highest knowledge scores were among dermatologists who practice in an academic setting plus an additional place; however, this difference was statistically non-significant (P = 0.060). Female dermatologists showed a higher attitude score compared to males (P = 0.028). The highest significant attitude score (P = 0.019) regarding clinical practice was recorded among those practicing cosmetic dermatology. The different studied groups of dermatologists revealed a significant impact on the attitude score (P = 0.049), and the evidence-practice score (P < 0.001). Ethical practices will improve the quality and integrity of dermatology research. © 2014 European Academy of Dermatology and Venereology.

Preaching What We Practice: Teaching Ethical Decision-Making to Computer Security Professionals

NASA Astrophysics Data System (ADS)

Fleischmann, Kenneth R.

The biggest challenge facing computer security researchers and professionals is not learning how to make ethical decisions; rather it is learning how to recognize ethical decisions. All too often, technology development suffers from what Langdon Winner terms technological somnambulism - we sleepwalk through our technology design, following past precedents without a second thought, and fail to consider the perspectives of other stakeholders [1]. Computer security research and practice involves a number of opportunities for ethical decisions. For example, decisions about whether or not to automatically provide security updates involve tradeoffs related to caring versus user autonomy. Decisions about online voting include tradeoffs between convenience and security. Finally, decisions about routinely screening e-mails for spam involve tradeoffs of efficiency and privacy. It is critical that these and other decisions facing computer security researchers and professionals are confronted head on as value-laden design decisions, and that computer security researchers and professionals consider the perspectives of various stakeholders in making these decisions.

A deviation from standard design? Clinical trials, research ethics committees, and the regulatory co-construction of organizational deviance.

PubMed

Hedgecoe, Adam

2014-02-01

Focusing on the high-profile drug disaster at London's Northwick Park Hospital in 2006, this article explores how such an event can be seen as an example of organizational deviance co-constructed between the company running the research and the research ethics committee which approved the trial. This deviance was the result of the normalization of a specific dosing practice in the broader regulatory field, allowing the researchers and regulators to take a risky dosing strategy for granted as best practice. Drawing on the work of Diane Vaughan, this article uses interview data with researchers and members of the research ethics committee concerned as well as documentary material, to show how work group cultures between regulators and those they are intended to oversee are maintained, and how the culturally embedded assumptions of such work groups can result in organizational and regulatory deviance.

On-line ethics education for occupational therapy clinician-educators: a single-group pre-/post-test study.

PubMed

VanderKaay, Sandra; Letts, Lori; Jung, Bonny; Moll, Sandra E

2018-05-20

Ethics education is a critical component of training rehabilitation practitioners. There is a need for capacity-building among ethics educators regarding facilitating ethical decision-making among students. The purpose of this study was to evaluate the utility of an on-line ethics education module for occupational therapy clinician-educators (problem-based learning tutors/clinical placement preceptors/evidence-based practice facilitators). The Knowledge-to-Action Process informed development and evaluation of the module. Clinician-educators (n = 33) viewed the module and reported on its impact on knowledge and facilitation practices via pre, post, and follow-up questionnaires. Pre- and post-test data indicated improvement in self-reported ethics knowledge (t = 8.275, p < 0.01). Follow-up data indicated knowledge did not decrease over time (t = -1.483, p = 0.075). There was improvement in self-reported intent to change practice (t = 4.93, p < 0.01); however, actual practice change was not indicated (t = -1.499, p = 0.072). This study provides preliminary data regarding an on-line ethics education module for clinician-educators. Future recommendations include broader consideration of context, adding supplemental knowledge translation components, and further research exploring outcomes with larger samples, longer follow-up and randomized trial methodology. Implications for Rehabilitation The on-line ethics module has potential to improve rehabilitation practice by addressing the noted gap in knowledge among clinician-educators. Viewing an on-line module regarding approaches to ethics education may not be sufficient to change clinician-educators' teaching practices. More time and opportunities to discuss ethics with student occupational therapists may be required to effect practice change among clinician-educators. Developing ethics education tools for clinician-educators requires ongoing and iterative input from knowledge users to optimize translation of ideas to practice.

Are all "research fields" equal? Rethinking practice for the use of data from crowdsourcing market places.

PubMed

Gleibs, Ilka H

2017-08-01

New technologies like large-scale social media sites (e.g., Facebook and Twitter) and crowdsourcing services (e.g., Amazon Mechanical Turk, Crowdflower, Clickworker) are impacting social science research and providing many new and interesting avenues for research. The use of these new technologies for research has not been without challenges, and a recently published psychological study on Facebook has led to a widespread discussion of the ethics of conducting large-scale experiments online. Surprisingly little has been said about the ethics of conducting research using commercial crowdsourcing marketplaces. In this article, I focus on the question of which ethical questions are raised by data collection with crowdsourcing tools. I briefly draw on the implications of Internet research more generally, and then focus on the specific challenges that research with crowdsourcing tools faces. I identify fair pay and the related issue of respect for autonomy, as well as problems with the power dynamic between researcher and participant, which has implications for withdrawal without prejudice, as the major ethical challenges of crowdsourced data. Furthermore, I wish to draw attention to how we can develop a "best practice" for researchers using crowdsourcing tools.

Tiny tweaks, big changes: An alternative strategy to empower ethical culture of human research in anesthesia (A Taiwan Acta Anesthesiologica Taiwanica-Ethics Review Task Force Report).

PubMed

Luk, Hsiang-Ning; Ennever, John F; Day, Yuan-Ji; Wong, Chih-Shung; Sun, Wei-Zen

2015-03-01

For this guidance article, the Ethics Review Task Force (ERTF) of the Journal reviewed and discussed the ethics issues related to publication of human research in the field of anesthesia. ERTF first introduced international ethics principles and minimal requirements of reporting of ethics practices, followed by discussing the universal problems of publication ethics. ERTF then compared the accountability and methodology of several medical journals in assuring authors' ethics compliance. Using the Taiwan Institutional Review Board system as an example, ERTF expressed the importance of institutional review board registration and accreditation to assure human participant protection. ERTF presented four major human research misconducts in the field of anesthesia in recent years. ERTF finally proposed a flow-chart to guide journal peer reviewers and editors in ethics review during the editorial process in publishing. Examples of template languages applied in the Ethics statement section in the manuscript are expected to strengthen the ethics compliance of the authors and to set an ethical culture for all the stakeholders involved in human research. Copyright © 2015. Published by Elsevier B.V.

Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor settings particularly Africa.

PubMed

Lairumbi, Geoffrey M; Michael, Parker; Fitzpatrick, Raymond; English, Michael C

2011-11-15

Promoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide. We reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services. Access to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries. Although in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. © 2011 Lairumbi et al; licensee BioMed Central Ltd.

Public health ethics: the voices of practitioners.

PubMed

Bernheim, Ruth Gaare

2003-01-01

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by public health professionals in day-to-day practice and of the type of ethics education and support they believe may be helpful.

Ethical Considerations in a Three-Tiered Approach to School Discipline Policy and Practice

ERIC Educational Resources Information Center

Mayworm, Ashley M.; Sharkey, Jill D.

2014-01-01

Research indicates that school discipline policies and practices have a significant influence on both student and school functioning. The purpose of this article is to uncover how the ethical standards guiding the field of school psychology inform school decisions about discipline in a three-tiered approach. Various discipline approaches,…

Synthetic Biology and the Translational Imperative.

PubMed

Heidari Feidt, Raheleh; Ienca, Marcello; Elger, Bernice Simone; Folcher, Marc

2017-12-18

Advances at the interface between the biological sciences and engineering are giving rise to emerging research fields such as synthetic biology. Harnessing the potential of synthetic biology requires timely and adequate translation into clinical practice. However, the translational research enterprise is currently facing fundamental obstacles that slow down the transition of scientific discoveries from the laboratory to the patient bedside. These obstacles including scarce financial resources and deficiency of organizational and logistic settings are widely discussed as primary impediments to translational research. In addition, a number of socio-ethical considerations inherent in translational research need to be addressed. As the translational capacity of synthetic biology is tightly linked to its social acceptance and ethical approval, ethical limitations may-together with financial and organizational problems-be co-determinants of suboptimal translation. Therefore, an early assessment of such limitations will contribute to proactively favor successful translation and prevent the promising potential of synthetic biology from remaining under-expressed. Through the discussion of two case-specific inventions in synthetic biology and their associated ethical implications, we illustrate the socio-ethical challenges ahead in the process of implementing synthetic biology into clinical practice. Since reducing the translational lag is essential for delivering the benefits of basic biomedical research to society at large and promoting global health, we advocate a moral obligation to accelerating translational research: the "translational imperative."

Ethical and effective ethnographic research methods: a case study with afghan refugees in California.

PubMed

Smith, Valerie J

2009-09-01

SCHOLARLY STUDIES OF REFUGEES and other vulnerable populations carry special ethical concerns. In this invited case study of Afghan refugees in Fremont, California, I provide illustrations and recommendations of ethical research methods with refugees. I also compare and contrast some ethical issues in the U.S. with issues in Thailand. The qualitative, ethnographic methods I report here demonstrate how to conduct culturally sensitive investigations by ethically approaching gatekeepers and other community members to preserve autonomy, ensure confidentiality, build trust, and improve the accuracy of interpretations and results. Six groups at risk for being marginalized in multiple ways within refugee populations are described. Ten best practices are recommended for ethically acquiring an in-depth understanding of the refugees, their community, and appropriate research methods.

Experiences, behaviors, and perceptions of registered nurses regarding research ethics and misconduct.

PubMed

Asman, Oren; Melnikov, Semyon; Barnoy, Sivia; Tabak, Nili

2017-01-01

Nurses engaging in research are held to research ethics standards. Research aim: Examine experiences, behaviors, and perceptions of nurses in Israel regarding research ethics and explore possible related factors. An original investigator-designed self-administered questionnaire measured five variables: (a) ethics in research, (b) encountered research misconduct during the course of one's studies, (c) the inclination to fabricate data, (d) the inclination to select or omit data, and (e) knowledge of research misconduct in the workplace. Additionally, demographic data were collected. Participants and research context: The questionnaire was completed by 151 Israeli registered nurses. 10.2% hold a PhD, 34 % hold an MA, 42.2% hold a BA, and 13.6% with no academic degree. Ethical considerations: The study was approved by the University's ethics committee; anonymity and consent of the respondents were respected. Registered nurses' level of studies achieved was significantly associated with a lower inclination to fabricate data, with one exception-PhD nurses were more inclined to fabricate data than nurses with a Master's degree. A trend was found in which a higher level of studies is associated with higher knowledge of research misconduct in the workplace. Results indicate that nurses' perceptions of research ethics change throughout their academic studies, indicating a positive influence of level of studies, research experience, and work experience on ethics perceptions. Nevertheless, PhD nurses showed a greater inclination to actually select, omit, or even fabricate data than MA nurses. This may be related to pressure to publish. PhD nursing programs should include ethics training. Academic faculty members should serve as role models regarding research integrity. Research ethics deserves further emphasis on all levels of nurse education in Israel, as well as in the nurses' code of ethics and related documents. This may positively impact ethical research practices.

In Pursuit of Ethical Research: Studying Hybrid Communities Using Online and Face-to-Face Communications

ERIC Educational Resources Information Center

Busher, Hugh; James, Nalita

2015-01-01

Hybrid communities using online and face-to-face communications to construct their practices are increasingly part of everyday life amongst people who have easy access to the internet. Researching these communities raises a number of challenges for researchers in the pursuit of ethical research. The paper begins by exploring what is understood by…

Picture This... Safety, Dignity, and Voice-Ethical Research with Children: Practical Considerations for the Reflexive Researcher

ERIC Educational Resources Information Center

Phelan, Shanon K.; Kinsella, Elizabeth Anne

2013-01-01

While engaged in a research project involving the use of visual methods with children, the authors discovered that there are many ethical considerations beyond what could have been predicted at the outset. Some of these considerations are important with respect to research with children in general, while others arise more particularly when using…

Evaluating the ethical acceptability of animal research.

PubMed

Bout, Henriëtte J; Fentener van Vlissingen, J Martje; Karssing, Edgar D

2014-11-01

The ethical acceptability of animal research is typically evaluated on a case-by-case basis. Legislation such as Directive 2010/63/EU on the protection of animals used for scientific purposes provides guidance for ethical evaluation of animal use proposals but does not dictate the outcome, leaving this determination to the ethical review committees of individual institutions. The authors assess different ethics models and how these are reflected in the guidelines of Directive 2010/63/EU. They also describe a matrix for carrying out harm-benefit analyses of animal use proposals, which they identified by examining the practices of three ethical review committees in the Netherlands. Finally, they discuss how this matrix can be applied by ethical review committees at other institutions.

[Ethical dilemmas of contemporary psychiatry].

PubMed

Filaković, Pavo; Pozgain, Ivan

2008-01-01

Ethics in the contemporary psychiatry, as well as in medicine in general, is based on the two core ethical traditions: deontological and theological. Good ethical decision takes into the consideration both traditions, and is preceded with ethical dilemmas to provide the best possible care to the patients in that moment. In the article are presented most recent research results of the literature about ethical dilemmas in psychiatry. Ethical dilemmas in everyday practice as well as compliance with the patients, psychiatric consultations, informed consent, treatment of personality disorders, pharmacological investigations, forensic psychiatry, forced hospitalisation, promotion of mental health, and dealing with the stigma of the mental diseases are showed in the article. The authors emphasize the necessity of constant questioning of ethical dilemmas in the contemporary psychiatry, because of the special status of psychiatry as a potentially risky field in practice, and because of intensive pharmacological investigations in psychiatric patients.

Developing and Designing Online Engineering Ethics Instruction for International Graduate Students

ERIC Educational Resources Information Center

Austin, Katherine A.; Gorsuch, Greta J.; Lawson, William D.; Newberry, Byron P.

2011-01-01

The present project embarked on an educational intervention, consisting of a series of online ethics learning modules, to aid international graduate students in overcoming the acculturation barriers to understanding and inculcating normative ethical obligations associated with engineering practice and research in the United States. A fundamental…

Time to finger point or fix? An invitation to join ongoing efforts to promote ethical authorship and other good publication practices.

PubMed

Woolley, Karen L; Gertel, Art; Hamilton, Cindy W; Jacobs, Adam; Snyder, Gene P

2013-01-01

In this commentary, we present evidence that unethical authorship (eg, guest and ghost authoring) and other publication practices are not restricted to the pharmaceutical industry; they also occur in academia. Such practices are not an industry problem--they are a research problem. To enhance trust in industry-sponsored research, companies have made rapid and far-reaching changes to their publication guidelines, policies, and procedures. Professional medical writers have adopted, and continue to implement, these changes. Although evidence indicates that industry practices are improving, there is certainly more to do, both in industry and academia. We invite readers to join ongoing efforts to promote ethical publication practices.

Nursing and genetic biobanks.

PubMed

Sanner, Jennifer E; Yu, Erica; Udtha, Malini; Williams, Pamela Holtzclaw

2013-12-01

Biobanks function as vital components in genetic research, which often requires large disease-based or population-based biospecimens and clinical data to study complex or rare diseases. Genetic biobanks aim to provide resources for translational research focusing on rapidly moving scientific findings from the laboratory into health care practice. The nursing profession must evolve as genetic biobanking practices advance. Nursing involvement in genetic biobanking practices comes with a distinct set of educational, ethical, and practice competencies. In response to these growing competency standards, nursing science developed a conceptual framework and continues to study ethical considerations to guide genetic biobanking initiatives. Copyright © 2013 Elsevier Inc. All rights reserved.

Research ethics I: Responsible conduct of research (RCR)--historical and contemporary issues pertaining to human and animal experimentation.

PubMed

Horner, Jennifer; Minifie, Fred D

2011-02-01

In this series of articles--Research Ethics I, Research Ethics II, and Research Ethics III--the authors provide a comprehensive review of the 9 core domains for the responsible conduct of research (RCR) as articulated by the Office of Research Integrity. In Research Ethics I, they present a historical overview of the evolution of RCR in the United States then examine the evolution of human and animal experimentation from the birth of scientific medicine through World War II to the present day. They relied on authoritative documents, both historical and contemporary, insightful commentary, and empirical research in order to identify current issues and controversies of potential interest to both faculty and students. The authors have written this article from a historical perspective because they think all readers interested in RCR should appreciate how the history of science and all the good--and harm--it has produced can inform how researchers practice responsible research in the 21st century and beyond.

[Ethical aspects of biological sample banks].

PubMed

Cambon-Thomsen, A; Rial-Sebbag, E

2003-02-01

Numerous activities in the domain of epidemiology require the constitution or the use of biological sample banks. Such biobanks raise ethical issues. A number of recommendations are applicable to this field, in France and elsewhere. Major principles applicable to biobanks include the respect of person's autonomy, the respect of human body, the respect of confidentiality. These principles are translated into practices through the following procedures: relevant information to the persons regarding their sample management prior to informed consent, opinion of an independent ethics committee, actual implementation of conditions for protecting samples and data. However, although those principles may appear quite simple and obvious, in the context of a largely international practice of research and given the large variety of biobanks, it is not always obvious for researchers to find their way. The attitudes vary between countries, there are numerous texts for various types of biobanks, the same texts raise different interpretations in different institutions, there are new ethical opinions expressed, and mainly the novelty of questions raised by the uses of samples that are possible today, especially in genetics, and were not foreseeable at the time of sampling make the field difficult in practice. This article reviews the types of biobanks, the relevant ethical issues. It also underlines the still unclear or ambiguous situations using some examples of practical situations.

Doing No Harm and Getting It Right: Guidelines for Ethical Research with Immigrant Communities

ERIC Educational Resources Information Center

Hernández, María G.; Nguyen, Jacqueline; Casanova, Saskias; Suárez-Orozco, Carola; Saetermoe, Carrie L.

2013-01-01

This chapter provides a guide to research logistics and ethics in studying immigrant families. The authors outline major pragmatic issues in research design and data collection to which all scholars must attend, although current practices often do not respond to the idiosyncratic issues related to vulnerable immigrant populations (e.g.,…

Ethics and regulation in organ procurement research.

PubMed

Ackerman, Terrence F; Winsett, Rebecca P

2002-12-01

This article explores the role of ethics and regulation in human research conducted by organ procurement agencies; basic ethical principles for human research are outlined. Organ procurement agencies are not required to observe federal regulations; however, voluntary adherence will ensure that procurement research is conducted according to current standards of ethical practice. Although most organ procurement research will qualify for exempt status, this determination should be made by an institutional review board. Even if studies qualify for exempt status, there is a moral presumption that informed consent should be sought, unless certain narrow conditions for waiver of consent are satisfied. Finally, when future research utilizing organ procurement records is anticipated, procurement coordinators should provide sufficiently detailed information to families about such plans to permit their advance informed consent to research activities.

Many worlds, one ethic: design and development of a global research ethics training curriculum.

PubMed

Rivera, Roberto; Borasky, David; Rice, Robert; Carayon, Florence

2005-05-01

The demand for basic research ethics training has grown considerably in the past few years. Research and education organizations face the challenge of providing this training with limited resources and training tools available. To meet this need, Family Health International (FHI), a U.S.-based international research organization, recently developed a Research Ethics Training Curriculum (RETC). It was designed as a practical, user-friendly tool that provides basic, up-to-date, standardized training on the ethics of human research. The curriculum can easily be adapted to different audiences and training requirements. The RETC was reviewed by a group of international experts and field tested in five countries. It is available in English, French, and Spanish as a three-ring binder and CD-ROM, as well as on the Web. It may be used as either an interactive self-study program or for group training.

[Discussion on solutions to ethical issues of clinical researches in a real world].

PubMed

Wang, Si-Cheng; Liu, Bao-Yan; Xiong, Ning-Ning; Xie, Qi; Zhang, Run-Shun; Zhou, Xue-Zhong; Qiao, Jie

2013-04-01

The paradigm of a real world study has become the frontiers of clinical researches, especially in the field of Chinese medicine, all over the world in recent years. In this paper, ethical issues which probably exist in real-world studies are raised and reviewed. Moreover, some preliminary solutions to these issues such as protecting subjects during the process of real-world studies and performing ethical review are raised based on recent years' practices to enhance the scientificity and ethical level of real-world studies.

"It's like Tuskegee in reverse": a case study of ethical tensions in institutional review board review of community-based participatory research.

PubMed

Malone, Ruth E; Yerger, Valerie B; McGruder, Carol; Froelicher, Erika

2006-11-01

Community-based participatory research (CBPR) addresses the social justice dimensions of health disparities by engaging marginalized communities, building capacity for action, and encouraging more egalitarian relationships between researchers and communities. CBPR may challenge institutionalized academic practices and the understandings that inform institutional review board deliberations and, indirectly, prioritize particular kinds of research. We present our attempt to study, as part of a CBPR partnership, cigarette sales practices in an inner-city community. We use critical and communitarian perspectives to examine the implications of the refusal of the university institutional review board (in this case, the University of California, San Francisco) to approve the study. CBPR requires expanding ethical discourse beyond the procedural, principle-based approaches common in biomedical research settings. The current ethics culture of academia may sometimes serve to protect institutional power at the expense of community empowerment.

Ethical and practical challenges surrounding genetic and genomic research in developing countries.

PubMed

Nyika, Aceme

2009-11-01

The nature of some potential benefits and risks associated with genetic research is different from the types of potential benefits and risks associated with other types of health research such as clinical trials and biomedical research involving humans. Whereas most potential risks associated with biomedical research or clinical trials are mainly biological in nature, potential risks associated with genetic research are mainly of socioeconomic nature. Although the peculiarity of some of the aspects of genetic research and the complexity of the science involved are acknowledged, the extent to which these characteristics hinder firstly disclosure of information to participants and their communities and secondly comprehension of the disclosed information is a practical challenge that tends to be exaggerated in some cases. In this article, a brief overview of the various types of genetic research will be given in order to set the scene for some ethical and practical issues surrounding the research in developing countries that will be discussed subsequently. Case studies that illustrate some of the ethical and practical issues flagged will be given, followed by suggestions on possible ways of tackling some of the challenges in developing country settings. Nevertheless, genetic and genomic research could go a long way in providing knowledge that could be useful in the development of drugs and vaccines for many diseases affecting the developing countries.

Proposing Ethical Practice Standards for Community-Engaged Research in Health Education

ERIC Educational Resources Information Center

Stellefson, Michael; Paige, Samantha R.; Alber, Julia M.; Barry, Adam E.; James, Delores

2015-01-01

"The Belmont Report" was written in 1979 to address the abuse of human participants in biomedical research. In the report, three ethical principles were described: (1) "beneficence," which describes an act of charity or kindness that maximizes possible benefits while minimizing possible harms; (2) "justice," described…

Getting personal: ethics and identity in global health research.

PubMed

Simon, Christian; Mosavel, Maghboeba

2011-08-01

'Researcher identity' affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen's (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. © 2011 Blackwell Publishing Ltd.

GETTING PERSONAL: ETHICS AND IDENTITY IN GLOBAL HEALTH RESEARCH

PubMed Central

Simon, Christian; Mosavel, Maghboeba

2011-01-01

‘Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen’s (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. PMID:21426482

Exploring ethics in practice: creating moral community in healthcare one place at a time.

PubMed

Scott, Sandra L; Marck, Patricia; Barton, Sylvia

2011-01-01

Examining everyday ethical situations in clinical practice is a vital but often overlooked activity for nursing leaders and practitioners, as well as most other healthcare professionals. In this paper, we share how a series of practitioner-led Ethics in Practice sessions (EIPs), which originated within a busy urban teaching hospital, were adapted and translated, first into home care and more recently, into an EIP session for public health nurses. The success of EIP sessions rests with their focus on issues that are selected by practitioners. The aims of EIPs are to foster ethical leadership within communities of practice, create safe places to share concerns, use relevant research evidence and other literature to support informed discussion, and generate stories that deepen our understanding of the ethical situations we encounter in our work. We hope our experience inspires nursing leaders, nursing colleagues and fellow healthcare professionals to consider using the EIP approach to build moral community and the idea of moral imagination with their clinical colleagues, one place at a time.

Effect of Simulation on Undergraduate Nursing Students' Knowledge of Nursing Ethics Principles.

PubMed

Donnelly, Mary Broderick; Horsley, Trisha Leann; Adams, William H; Gallagher, Peggy; Zibricky, C Dawn

2017-12-01

Background Undergraduate nursing education standards include acquisition of knowledge of ethics principles and the prevalence of health-care ethical dilemmas mandates that nursing students study ethics. However, little research has been published to support best practices for teaching/learning ethics principles. Purpose This study sought to determine if participation in an ethics consultation simulation increased nursing students' knowledge of nursing ethics principles compared to students who were taught ethics principles in the traditional didactic format. Methods This quasi-experimental study utilized a pre-test/post-test design with randomized assignment of students at three universities into both control and experimental groups. Results Nursing students' knowledge of nursing ethics principles significantly improved from pre-test to post-test ( p = .002); however, there was no significant difference between the experimental and control groups knowledge scores ( p = .13). Conclusion Further research into use of simulation to teach ethics principles is indicated.

Ethical issues in the qualitative researcher--participant relationship.

PubMed

Eide, Phyllis; Kahn, David

2008-03-01

Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the participant. The purpose of this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice.

Hand hygiene compliance: is there a theory-practice-ethics gap?

PubMed

Mortell, Manfred

Practice is usually based on tradition, rituals and outdated information; there is often an additional gap between theoretical knowledge and its application in practice. This theory-practice gap has long existed (Allmark, 1995; Hewison et al, 1996). It often arises when theory is ignored because it is seen as idealistic and impractical, even if it is practical and beneficial. Most research relating to the lack of integration between theory and practice has concluded that environmental factors are responsible and will affect learning and practice outcomes. The author believes an additional dimension of ethics is required to bridge the gap between theory and practice. This would be a moral obligation to ensure theory and practice are integrated. To implement new practices effectively, healthcare practitioners must deem these practices worthwhile and relevant to their role. This introduces a new concept that the author calls the theory-practice-ethics gap. This theory-practice-ethics gap must be considered when examining some of the unacceptable outcomes in healthcare practice (Mortell, 2009). The literature suggests that there is a crisis of ethics where theory and practice integrate, and practitioners are failing to fulfil their duty as providers of healthcare and as patient advocates. This article examines the theory-practice-ethics gap when applied to hand hygiene. Non-compliance exists in hand hygiene among practitioners, which may increase patient mortality and morbidity rates, and raise healthcare costs. Infection prevention and control programmes to improve hand hygiene among staff include: ongoing education and training; easy access to facilities such as wash basins; antiseptic/alcohol handgels that are convenient, effective, and skin- and user-friendly; and organisational recognition and support for clinicians in hand washing and handgel practices. Yet these all appear to have failed to achieve the required and desired compliance in hand hygiene.

What makes public health studies ethical? Dissolving the boundary between research and practice

PubMed Central

2014-01-01

Background The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary – whether on grounds of primary purpose, temporality, underlying legal authority, departure from usual practice, or direct benefits to participants – have been unsatisfactory. Public Health Ontario has eschewed this distinction between research and other evaluative activities, choosing to adopt a common framework and process to guide ethical reflection on all public health evaluative projects throughout their lifecycle – from initial planning through to knowledge exchange. Discussion The Public Health Ontario framework was developed by a working group of public health and ethics professionals and scholars, in consultation with individuals representing a wide range of public health roles. The first part of the framework interprets the existing Canadian research ethics policy statement (commonly known as the TCPS 2) through a public health lens. The second part consists of ten questions that guide the investigator in the application of the core ethical principles to public health initiatives. The framework is intended for use by those designing and executing public health evaluations, as well as those charged with ethics review of projects. The goal is to move toward a culture of ethical integrity among investigators, reviewers and decision-makers, rather than mere compliance with rules. The framework is consonant with the perspective of the learning organization and is generalizable to other public health organizations, to health services organizations, and beyond. Summary Public Health Ontario has developed an ethics framework that is applicable to any evidence-generating activity, regardless of whether it is labelled research. While developed in a public health context, it is readily adaptable to other health services organizations and beyond. PMID:25104180

Strengthening moral reasoning through dedicated ethics training in dietetic preparatory programs.

PubMed

Hewko, Sarah J; Cooper, Sarah L; Cummings, Greta G

2015-01-01

Moral reasoning skills, associated with the ability to make ethical decisions effectively, must be purposively fostered. Among health professionals, enhanced moral reasoning is linked to superior clinical performance. Research demonstrates that moral reasoning is enhanced through dedicated, discussion-based ethics education offered over a period of 3-12 weeks. Current dietetic students and practicing dietitians seeking to strengthen their moral reasoning skills can undertake elective ethics education. Further research within dietetic preparatory programs is warranted to better inform the development and implementation of ethics courses. Copyright © 2015 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.

Promoting an ethic of engagement in pediatric palliative care research.

PubMed

Rahimzadeh, Vasiliki; Bartlett, Gillian; Longo, Cristina; Crimi, Laura; Macdonald, Mary Ellen; Jabado, Nada; Ells, Carolyn

2015-10-16

This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.

Ethics, big data and computing in epidemiology and public health.

PubMed

Salerno, Jennifer; Knoppers, Bartha M; Lee, Lisa M; Hlaing, WayWay M; Goodman, Kenneth W

2017-05-01

This article reflects on the activities of the Ethics Committee of the American College of Epidemiology (ACE). Members of the Ethics Committee identified an opportunity to elaborate on knowledge gained since the inception of the original Ethics Guidelines published by the ACE Ethics and Standards of Practice Committee in 2000. The ACE Ethics Committee presented a symposium session at the 2016 Epidemiology Congress of the Americas in Miami on the evolving complexities of ethics and epidemiology as it pertains to "big data." This article presents a summary and further discussion of that symposium session. Three topic areas were presented: the policy implications of big data and computing, the fallacy of "secondary" data sources, and the duty of citizens to contribute to big data. A balanced perspective is needed that provides safeguards for individuals but also furthers research to improve population health. Our in-depth review offers next steps for teaching of ethics and epidemiology, as well as for epidemiological research, public health practice, and health policy. To address contemporary topics in the area of ethics and epidemiology, the Ethics Committee hosted a symposium session on the timely topic of big data. Technological advancements in clinical medicine and genetic epidemiology research coupled with rapid advancements in data networks, storage, and computation at a lower cost are resulting in the growth of huge data repositories. Big data increases concerns about data integrity; informed consent; protection of individual privacy, confidentiality, and harm; data reidentification; and the reporting of faulty inferences. Copyright © 2017 Elsevier Inc. All rights reserved.

Undergraduate healthcare ethics education, moral resilience, and the role of ethical theories.

PubMed

Monteverde, Settimio

2014-06-01

This article combines foundational and empirical aspects of healthcare education and develops a framework for teaching ethical theories inspired by pragmatist learning theory and recent work on the concept of moral resilience. It describes an exemplary implementation and presents data from student evaluation. After a pilot implementation in a regular ethics module, the feasibility and acceptance of the novel framework by students were evaluated. In addition to the regular online module evaluation, specific questions referring to the teaching of ethical theories were added using simple (yes/no) and Likert rating answer formats. At the Bern University of Applied Sciences, a total of 93 students from 2 parallel sub-cohorts of the bachelor's program in nursing science were sent the online survey link after having been exposed to the same modular contents. A total of 62% of all students participated in the survey. The survey was voluntary and anonymous. Students were free to write their name and additional comments. Students consider ethical theories-as taught within the proposed framework-as practically applicable, useful, and transferable into practice. Teaching ethical theories within the proposed framework overcomes the shortcomings described by current research. Students do not consider the mutually exclusive character of ethical theories as an insurmountable problem. The proposed framework is likely to promote the effectiveness of healthcare ethics education. Inspired by pragmatist learning theory, it enables students to consider ethical theories as educative playgrounds that help them to "frame" and "name" the ethical issues they encounter in daily practice, which is seen as an expression of moral resilience. Since it does not advocate a single ethical theory, but is open to the diversity of traditions that shape ethical thinking, it promotes a culturally sensitive, ethically reflected healthcare practice. © The Author(s) 2013.

Human research ethics committees in technical universities.

PubMed

Koepsell, David; Brinkman, Willem-Paul; Pont, Sylvia

2014-07-01

Human research ethics has developed in both theory and practice mostly from experiences in medical research. Human participants, however, are used in a much broader range of research than ethics committees oversee, including both basic and applied research at technical universities. Although mandated in the United States, the United Kingdom, Canada, and Australia, non-medical research involving humans need not receive ethics review in much of Europe, Asia, Latin America, and Africa. Our survey of the top 50 technical universities in the world shows that, where not specifically mandated by law, most technical universities do not employ ethics committees to review human studies. As the domains of basic and applied sciences expand, ethics committees are increasingly needed to guide and oversee all such research regardless of legal requirements. We offer as examples, from our experience as an ethics committee in a major European technical university, ways in which such a committee provides needed services and can help ensure more ethical studies involving humans outside the standard medical context. We provide some arguments for creating such committees, and in our supplemental article, we provide specific examples of cases and concerns that may confront technical, engineering, and design research, as well as outline the general framework we have used in creating our committee. © The Author(s) 2014.

Inernational research in health care management: its need in the 21st century, methodological challenges, ethical issues, pitfalls, and practicalities.

PubMed

Buttigieg, Sandra C; Rathert, Cheryl; D'Aunno, Thomas A; Savage, Grant T

2015-01-01

This commentary argues in favor of international research in the 21st century. Advances in technology, science, communication, transport, and infrastructure have transformed the world into a global village. Industries have increasingly adopted globalization strategies. Likewise, the health sector is more internationalized whereby comparisons between diverse health systems, international best practices, international benchmarking, cross-border health care, and cross-cultural issues have become important subjects in the health care literature. The focus has now turned to international, collaborative, cross-national, and cross-cultural research, which is by far more demanding than domestic studies. In this commentary, we explore the methodological challenges, ethical issues, pitfalls, and practicalities within international research and offer possible solutions to address them. The commentary synthesizes contributions from four scholars in the field of health care management, who came together during the annual meeting of the Academy of Management to discuss with members of the Health Care Management Division the challenges of international research. International research is worth pursuing; however, it calls for scholarly attention to key methodological and ethical issues for its success. This commentary addresses salient issues pertaining to international research in one comprehensive account.

Researchers and the Rural Poor: Asking Questions in the Third World.

ERIC Educational Resources Information Center

Adams, William M.; Megaw, Charles C.

1997-01-01

Discusses the theory and practice of rural socioeconomic surveys in developing nations. Highlights the close links between choice of research topic, field area and research methods, and the ethics of field research. Offers a personal commentary on some practical problems concerning field research. (MJP)

Ethical and Moral Decision Making: Praxis and Hermeneutics for School Leaders

ERIC Educational Resources Information Center

Minnis, Joan Quinn

2011-01-01

There has been a renewed interest in the inclusion of ethics as part of educators' training and interest in understanding the moral and ethical dimensions of educational practice. This research was designed to study the types of dilemmas school level leaders face, the characteristics of typical dilemmas, and the implications for leader…

Studying Young People's Blogs: Ethical Implications

ERIC Educational Resources Information Center

Fowley, Cathy

2013-01-01

As internet research was gradually established as a discipline, whose focus and/or locus is the internet (Rall, 2007), ethical issues came to the fore. These issues, often centering around the shifting concept of privacy and ownership of text, consider new practices and communications online, and increasingly, the conduct of ethical research…

Addressing Religious Plurality--A Teacher Perspective on Minority Religion and Secular Ethics Education

ERIC Educational Resources Information Center

Zilliacus, Harriet

2013-01-01

The Finnish education system recognizes religious plurality by offering education in pupils' own religion or in secular ethics. However, little research has been undertaken on how plurality is addressed in classroom practice. This study investigates how 31 minority religion and secular ethics teachers view the task of supporting and including…

The role of ethics in data governance of large neuro-ICT projects.

PubMed

Stahl, Bernd Carsten; Rainey, Stephen; Harris, Emma; Fothergill, B Tyr

2018-05-14

We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts. We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches. Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague. The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance.

Assessing the impact of DRGs on patient care and professional practice in Switzerland (IDoC) - a potential model for monitoring and evaluating healthcare reform.

PubMed

Wild, Verina; Carina, Fourie; Frouzakis, Regula; Clarinval, Caroline; Fässler, Margrit; Elger, Bernice; Gächter, Thomas; Leu, Agnes; Spirig, Rebecca; Kleinknecht, Michael; Radovanovic, Dragana; Mouton Dorey, Corine; Burnand, Bernard; Vader, John-Paul; Januel, Jean-Marie; Biller-Andorno, Nikola; The IDoC Group

2015-01-01

The starting point of the interdisciplinary project "Assessing the impact of diagnosis related groups (DRGs) on patient care and professional practice" (IDoC) was the lack of a systematic ethical assessment for the introduction of cost containment measures in healthcare. Our aim was to contribute to the methodological and empirical basis of such an assessment. Five sub-groups conducted separate but related research within the fields of biomedical ethics, law, nursing sciences and health services, applying a number of complementary methodological approaches. The individual research projects were framed within an overall ethical matrix. Workshops and bilateral meetings were held to identify and elaborate joint research themes. Four common, ethically relevant themes emerged in the results of the studies across sub-groups: (1.) the quality and safety of patient care, (2.) the state of professional practice of physicians and nurses, (3.) changes in incentives structure, (4.) vulnerable groups and access to healthcare services. Furthermore, much-needed data for future comparative research has been collected and some early insights into the potential impact of DRGs are outlined. Based on the joint results we developed preliminary recommendations related to conceptual analysis, methodological refinement, monitoring and implementation.

Using video in childbirth research.

PubMed

Harte, J Davis; Homer, Caroline Se; Sheehan, Athena; Leap, Nicky; Foureur, Maralyn

2017-03-01

Conducting video-research in birth settings raises challenges for ethics review boards to view birthing women and research-midwives as capable, autonomous decision-makers. This study aimed to gain an understanding of how the ethical approval process was experienced and to chronicle the perceived risks and benefits. The Birth Unit Design project was a 2012 Australian ethnographic study that used video recording to investigate the physical design features in the hospital birthing space that might influence both verbal and non-verbal communication and the experiences of childbearing women, midwives and supporters. Participants and research context: Six women, 11 midwives and 11 childbirth supporters were filmed during the women's labours in hospital birth units and interviewed 6 weeks later. Ethical considerations: The study was approved by an Australian Health Research Ethics Committee after a protracted process of negotiation. The ethics committee was influenced by a traditional view of research as based on scientific experiments resulting in a poor understanding of video-ethnographic research, a paradigmatic view of the politics and practicalities of modern childbirth processes, a desire to protect institutions from litigation, and what we perceived as a paternalistic approach towards protecting participants, one that was at odds with our aim to facilitate situations in which women could make flexible, autonomous decisions about how they might engage with the research process. The perceived need for protection was overly burdensome and against the wishes of the participants themselves; ultimately, this limited the capacity of the study to improve care for women and babies. Recommendations are offered for those involved in ethical approval processes for qualitative research in childbirth settings. The complexity of issues within childbirth settings, as in most modern healthcare settings, should be analysed using a variety of research approaches, beyond efficacy-style randomised controlled trials, to expand and improve practice-based results.

Ethical issues faced by field primatologists: asking the relevant questions.

PubMed

Fedigan, Linda Marie

2010-09-01

Field primatologists face unusual ethical issues. We study animals rather than people and receive research approval from animal care rather than ethics committees. However, animal care evaluation forms are developed from concerns about laboratory animal research and are based on the "Three R's" for humane treatment of captive experimental subjects (replacement, reduction and refinement), which are only debatably relevant to field research. Scientists who study wild, free-ranging primates in host countries experience many ethical dilemmas seldom dealt with in animal care forms. This paper reviews the ethical issues many field primatologists say they face and how these might be better addressed by animal care forms. The ethical issues arising for field researchers are divided into three categories: "Presence, Protocols and People" and for each the most frequent issues are described. The most commonly mentioned ethical concern arising from our presence in the field is the possibility of disease transmission. Although most primate field studies employ only observational protocols, the practice of habituating our study animals to close human presence is an ethical concern for many since it can lessen the animals' fear of all humans, thereby facilitating undesirable behaviors (e.g., crop-raiding) and rendering them vulnerable to harm. Field primatologists who work in host countries must observe national laws and local traditions. As conservationists, primatologists must often negotiate between the resource needs and cultural practices of local people and the interests of the nonhuman primates. Many say they face more ethical dilemmas arising from human interactions than from research on the animals per se. This review concludes with suggestions for relevant questions to ask on animal care forms, and actions that field primatologists can take to better inform animal care committees about the common ethical issues we experience as well as how to develop guidelines for addressing them. (c) 2010 Wiley-Liss, Inc.

The role of professional knowledge in case-based reasoning in practical ethics.

PubMed

Pinkus, Rosa Lynn; Gloeckner, Claire; Fortunato, Angela

2015-06-01

The use of case-based reasoning in teaching professional ethics has come of age. The fields of medicine, engineering, and business all have incorporated ethics case studies into leading textbooks and journal articles, as well as undergraduate and graduate professional ethics courses. The most recent guidelines from the National Institutes of Health recognize case studies and face-to-face discussion as best practices to be included in training programs for the Responsible Conduct of Research. While there is a general consensus that case studies play a central role in the teaching of professional ethics, there is still much to be learned regarding how professionals learn ethics using case-based reasoning. Cases take many forms, and there are a variety of ways to write them and use them in teaching. This paper reports the results of a study designed to investigate one of the issues in teaching case-based ethics: the role of one's professional knowledge in learning methods of moral reasoning. Using a novel assessment instrument, we compared case studies written and analyzed by three groups of students whom we classified as: (1) Experts in a research domain in bioengineering. (2) Novices in a research domain in bioengineering. (3) The non-research group--students using an engineering domain in which they were interested but had no in-depth knowledge. This study demonstrates that a student's level of understanding of a professional knowledge domain plays a significant role in learning moral reasoning skills.

HIV Prevention Research Ethics: An Introduction to the Special Issue

PubMed Central

Fisher, Celia B.

2018-01-01

This special issue of the journal of Empirical Research on Human Research Ethics represents a sampling of projects fostered through the NIDA-funded Fordham University HIV Prevention Research Ethics Institute. The first three articles employ processes of co-learning to give voice to the experiences of individuals recovering from substance abuse and engaged in sex work who have participated in HIV prevention studies in the United States, India, and the Philippines. The fourth article describes a unique community-based approach to the development of research ethics training modules designed to increase participation of American Indian and Alaskan Native (AI/AN) tribal members as partners in research on health disparities. The last two articles focus a critical scholarly lens on two underexamined areas confronting IRB review of HIV research: The emerging and continuously changing ethical challenges of using social media sites for recruitment into HIV prevention research, and the handling of research-related complaints from participants involving perceived research harms or research experiences that do not accord with their initial expectations. Together, the articles in this special issue identify key ethical crossroads and provide suggestions for best practices that respect the values and merit the trust of research participants. PMID:24572078

Nature and governance of veterinary clinical research conducted in the UK.

PubMed

Fordyce, P; Mullan, S

2017-01-21

In order to quantify the amount of clinical research conducted on client-owned animals under the Veterinary Surgeons Act 1966, and the nature and extent of any ethical review of that research, a questionnaire was sent to 6 UK veterinary schools, 1 charity veterinary clinic and 12 private referral clinics. The questionnaire examined whether and how much clinical research respondents undertook, and the composition of any ethical review panels examining research proposals. The questionnaire revealed a substantial amount of clinical research was conducted in the UK, with over 200 veterinary surgeons involved in the year of the survey, with at least 170 academic papers involving clinical research published by respondents in the same year. However, it proved impossible to quantify the full extent of clinical research in the UK. All UK veterinary schools required ethical review of clinical research. The composition and working practices of their ethical review panels generally reflected skill sets in ethical review panels set-up under statute to consider the ethics of non-clinical biomedical research on animals and clinical research conducted on human patients. The process for review of clinical research in the private sector was less clear. British Veterinary Association.

Twelve Years of Fogarty-Funded Bioethics Training in Latin America and the Caribbean: Achievements and Challenges

PubMed Central

Saenz, Carla; Heitman, Elizabeth; Luna, Florencia; Litewka, Sergio; Goodman, Kenneth W.; Macklin, Ruth

2017-01-01

The landscape in research ethics has changed significantly in Latin America and the Caribbean over the past two decades. Research ethics has gone from being a largely foreign concept and unfamiliar practice to an integral and growing feature of regional health research systems. Four bioethics training programs have been funded by the Fogarty International Center (FIC) in this region in the past 12 years. Overall, they have contributed significantly to changing the face of research ethics through the creation of locally relevant training materials and courses (including distance learning), academic publications, workshops, and conferences in Spanish, and strengthening ethics review committees and national systems of governance. This paper outlines their achievements and challenges, and reflects on current regional needs and what the future may hold for research ethics and bioethics training in Latin America and the Caribbean. PMID:24782074

Research ethics committees in Japan: A perspective from thirty years of experience at Tokushima University.

PubMed

Yanagawa, Hiroaki; Katashima, Rumi; Takeda, Noriaki

2015-01-01

The first Japanese ethics committee for biomedical research involving human subjects was established at Tokushima University in 1982. Although this committee was not formed as a response to national directives, the government eventually developed ethical guidelines, such as the Ethical Guidelines for Clinical Studies that were established in 2003. The practical impact of such guidelines was a rapid increase in the number of protocols seeking ethics committee approval and, accordingly, an increase in the workload of ethics committees. This review describes the activity of the ethics committee at Tokushima University during the last thirty years and discusses the infrastructure that best supports the activities of this committee. In addition, we address the issues that ethics committees now face and discuss future directions. J. Med. Invest. 62: 114-118, August, 2015.

Evaluating clinical ethics support in mental healthcare: a systematic literature review.

PubMed

Hem, Marit Helene; Pedersen, Reidar; Norvoll, Reidun; Molewijk, Bert

2015-06-01

A systematic literature review on evaluation of clinical ethics support services in mental healthcare is presented and discussed. The focus was on (a) forms of clinical ethics support services, (b) evaluation of clinical ethics support services, (c) contexts and participants and (d) results. Five studies were included. The ethics support activities described were moral case deliberations and ethics rounds. Different qualitative and quantitative research methods were utilized. The results show that (a) participants felt that they gained an increased insight into moral issues through systematic reflection; (b) there was improved cooperation among multidisciplinary team members; (c) it was uncertain whether clinical ethics support services led to better patient care; (d) the issue of patient and client participation is complex; and (e) the implementation process is challenging. Clinical ethics support services have mainly been studied through the experiences of the participating facilitators and healthcare professionals. Hence, there is limited knowledge of whether and how various types of clinical ethics support services influence the quality of care and how patients and relatives may evaluate clinical ethics support services. Based on the six excluded 'grey zone articles', in which there was an implicit focus on ethics reflection, other ways of working with ethical reflection in practice are discussed. Implementing and evaluating clinical ethics support services as approaches to clinical ethics support that are more integrated into the development of good practice are in focus. In order to meet some of the shortcomings of the field of clinical ethics support services, a research project that aims to strengthen ethics support in the mental health services, including patients' and caregivers' views on ethical challenges, is presented. © The Author(s) 2014.

Ethics in cryptomarket research.

PubMed

Martin, James; Christin, Nicolas

2016-09-01

The recent proliferation of cryptomarkets and the associated emergence of a sub-field of research on the anonymous web have outpaced the development of an ethical consensus regarding research methods and dissemination amongst scholars working in this unique online space. The peculiar characteristics of cryptomarket research, which often involves encryption, illegal activity, large-scale data collection, and geographical separation from research participants, challenge conventional ethical frameworks. A further complicating factor for reaching ethical consensus is the confluence of scholars drawn from a variety of academic disciplines, each with their own particular norms, practices and perspectives. This paper is intended to stimulate awareness and debate, and to prompt further reflection amongst scholars studying these fascinating online phenomena. The paper explores tensions and addresses some of the more prominent and pressing ethical questions, including public vs. private online spaces, anonymity, data sharing and ownership, risks and threats to research subjects and researchers. Also discussed is how best to balance the potential harms of cryptomarket research against benefits to the public. Copyright © 2016 Elsevier B.V. All rights reserved.

Is there anything unique in the ethics of synthetic biology?

PubMed

Heyd, David

2012-01-01

Synthetic biology does not create any ethical dilemmas that have not already been raised in the development of practices such as genetic screening, genetic engineering, and other interventions in the evolutionary processes. The issue is, nevertheless, ethically serious. Two different angles are examined: the philosophical legitimacy of human intervention in the shaping of human nature, and the more pragmatic (though by no means less important) question of the risks involved in such a novel line of research. As for the first, the claim made here is that in principle there is no constraint in human intervention in the world, since ultimately the source of any value lies in human interests, welfare, and values. This is an approach that is opposite to Habermas's. As for the practical problem of risk, research in synthetic biology calls for particular caution, since in at least the first stages of a new research or program, there is no social regulation, and society is wholly dependent on the scientist's ethical integrity.

Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program

PubMed Central

Meagher, Karen M.

2016-01-01

Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. In this article, we argue for incorporating a specific method of ethical deliberation—deliberative public bioethics—into public health. We describe how deliberative public bioethics is a method of engagement that can be helpful in public health. Although medical, research, and public health ethics can be considered some of what bioethics addresses, deliberative public bioethics offers both a how and where. Using the Human Genome Project Ethical, Legal, and Social Implications program as an example of effective incorporation of deliberative processes to integrate ethics into public health policy, we examine how deliberative public bioethics can integrate both public health and bioethics perspectives into three areas of public health practice: research, education, and health policy. We then offer recommendations for future collaborations that integrate deliberative methods into public health policy and practice. PMID:26843669

Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program.

PubMed

Meagher, Karen M; Lee, Lisa M

2016-01-01

Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. In this article, we argue for incorporating a specific method of ethical deliberation--deliberative public bioethics--into public health. We describe how deliberative public bioethics is a method of engagement that can be helpful in public health. Although medical, research, and public health ethics can be considered some of what bioethics addresses, deliberative public bioethics offers both a how and where. Using the Human Genome Project Ethical, Legal, and Social Implications program as an example of effective incorporation of deliberative processes to integrate ethics into public health policy, we examine how deliberative public bioethics can integrate both public health and bioethics perspectives into three areas of public health practice: research, education, and health policy. We then offer recommendations for future collaborations that integrate deliberative methods into public health policy and practice.

Ethics support in community care makes a difference for practice.

PubMed

Magelssen, Morten; Gjerberg, Elisabeth; Lillemoen, Lillian; Førde, Reidun; Pedersen, Reidar

2018-03-01

Through the Norwegian ethics project, ethics activities have been implemented in the health and care sector in more than 200 municipalities. To study outcomes of the ethics activities and examine which factors promote and inhibit significance and sustainability of the activities. Two online questionnaires about the municipal ethics activities. Participants and research context: A total of 137 municipal contact persons for the ethics project answered the first survey (55% response rate), whereas 217 ethics facilitators responded to the second survey (33% response rate). Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services. Around half of the respondents found the ethics project to have been highly significant for daily professional practice. Outcomes include better handling of ethical challenges, better employee cooperation, better service quality, and better relations to patients and next of kin. Factors associated with sustainability and/or significance of the activities were sufficient support from stakeholders, sufficient available time, and ethics facilitators having sufficient knowledge and skills in ethics and access to supervision. This study shows that ethics initiatives can be both sustainable and significant for practice. There is a need to create regional or national structures for follow-up and develop more comprehensive ethics training for ethics facilitators. It is both possible and potentially important to implement clinical ethics support activities in community health and care services systematically on a large scale. Future ethics initiatives in the community sector should be designed in light of documented promoting and inhibiting factors.

Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan.

PubMed

Minari, Jusaku; Shirai, Tetsuya; Kato, Kazuto

2014-12-01

As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project-the Genome Science Project-this article presents a novel approach to conducting a specific policy for personal genome research in the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology.

`I Don't Even Have Time to be Their Friend!' Ethical Dilemmas in Ph.D. Supervision in the Hard Sciences

NASA Astrophysics Data System (ADS)

Löfström, Erika; Pyhältö, Kirsi

2015-11-01

This study focused on exploring students' and supervisors' perceptions of ethical problems in doctoral supervision in the natural sciences. Fifteen supervisors and doctoral students in one research community in the natural sciences were interviewed about their practices and experiences in the doctoral process and supervision. We explored to what extent doctoral students and supervisors experienced similar or different ethical challenges in the supervisory relationship and analyzed how the experiences of ethical dilemmas in supervision could be understood in light of the structure and practices of natural science research groups. The data were analyzed by theory-driven content analysis. Five ethical principles, namely non-maleficence, beneficence, autonomy, fidelity and justice, were used as a framework for identifying ethical issues. The results show that one major question that appears to underpin many of the emerging ethical issues is that the supervisors and students have different expectations of the supervisory role. The second important observation is that doctoral students primarily described their own experiences, whereas the supervisors described their activities as embedded in a system and elaborated on the causes and consequences at a system level.

Empirical ethics, context-sensitivity, and contextualism.

PubMed

Musschenga, Albert W

2005-10-01

In medical ethics, business ethics, and some branches of political philosophy (multi-culturalism, issues of just allocation, and equitable distribution) the literature increasingly combines insights from ethics and the social sciences. Some authors in medical ethics even speak of a new phase in the history of ethics, hailing "empirical ethics" as a logical next step in the development of practical ethics after the turn to "applied ethics." The name empirical ethics is ill-chosen because of its associations with "descriptive ethics." Unlike descriptive ethics, however, empirical ethics aims to be both descriptive and normative. The first question on which I focus is what kind of empirical research is used by empirical ethics and for which purposes. I argue that the ultimate aim of all empirical ethics is to improve the context-sensitivity of ethics. The second question is whether empirical ethics is essentially connected with specific positions in meta-ethics. I show that in some kinds of meta-ethical theories, which I categorize as broad contextualist theories, there is an intrinsic need for connecting normative ethics with empirical social research. But context-sensitivity is a goal that can be aimed for from any meta-ethical position.

Dare we speak of ethics? Attending to the unsayable amongst nurse leaders.

PubMed

Schick Makaroff, Kara; Storch, Janet; Newton, Lorelei; Fulton, Tom; Stevenson, Lynne

2010-09-01

There is increasing emphasis on the need for collaboration between practice and academic leaders in health care research. However, many problems can arise owing to differences between academic and clinical goals and timelines. In order for research to move forward it is important to name and address these issues early in a project. In this article we use an example of a participatory action research study of ethical practice in nursing to highlight some of the issues that are not frequently discussed and we identify the impact of things not-named. Further, we offer our insights to others who wish to be partners in research between academic and practice settings. These findings have wide implications for ameliorating misunderstandings that may develop between nurse leaders in light of collaborative research, as well as for participatory action research.

A social-ecological framework: A model for addressing ethical practice in nursing.

PubMed

Davidson, Patricia; Rushton, Cynda Hylton; Kurtz, Melissa; Wise, Brian; Jackson, Debra; Beaman, Adam; Broome, Marion

2018-03-01

To develop a framework to enable discussion, debate and the formulation of interventions to address ethical issues in nursing practice. Social, cultural, political and economic drivers are rapidly changing the landscape of health care in our local environments but also in a global context. Increasingly, nurses are faced with a range of ethical dilemmas in their work. This requires investigation into the culture of healthcare systems and organisations to identify the root causes and address the barriers and enablers of ethical practice. The increased medicalisation of health care; pressures for systemisation; efficiency and cost reduction; and an ageing population contribute to this complexity. Often, ethical issues in nursing are considered within the abstract and philosophical realm until a dilemma is encountered. Such an approach limits the capacity to tangibly embrace ethical values and frameworks as pathways to equitable, accessible, safe and quality health care and as a foundation for strengthening a supportive and enabling workplace for nurses and other healthcare workers. Conceptual framework development. A comprehensive literature review was undertaken using the social-ecological framework as an organising construct. This framework views ethical practice as the outcome of interaction among a range of factors at eight levels: individual factors (patients and families); individual factors (nurses); relationships between healthcare professionals; relationships between patients and nurses; organisational healthcare context; professional and education regulation and standards; community; and social, political and economic. Considering these elements as discrete, yet interactive and intertwined forces can be useful in developing interventions to promote ethical practice. We consider this framework to have utility in policy, practice, education and research. Nurses face ethical challenges on a daily basis, considering these within a social-ecological framework can assist in developing strategies and resolutions. © 2017 John Wiley & Sons Ltd.

Six Challenges for Ethical Conduct in Science.

PubMed

Niemi, Petteri

2016-08-01

The realities of human agency and decision making pose serious challenges for research ethics. This article explores six major challenges that require more attention in the ethics education of students and scientists and in the research on ethical conduct in science. The first of them is the routinization of action, which makes the detection of ethical issues difficult. The social governance of action creates ethical problems related to power. The heuristic nature of human decision making implies the risk of ethical bias. The moral disengagement mechanisms represent a human tendency to evade personal responsibility. The greatest challenge of all might be the situational variation in people's ethical behaviour. Even minor situational factors have a surprisingly strong influence on our actions. Furthermore, finally, the nature of ethics itself also causes problems: instead of clear answers, we receive a multitude of theories and intuitions that may sometimes be contradictory. All these features of action and ethics represent significant risks for ethical conduct in science. I claim that they have to be managed within the everyday practices of science and addressed explicitly in research ethics education. I analyse them and suggest some ways in which their risks can be alleviated.

Ethical Principles in Practice: Evidence from Participatory Action Research

ERIC Educational Resources Information Center

Smith, Liz

2008-01-01

A significant challenge for all participants in the autism spectrum disorder participatory action research (ASD PAR) project, including the Ministry of Education, the local project teams (LPT) and mentors, was the lack of availability of a single ethics approval process for the project in its entirety and, in particular, one that could accommodate…

An Analysis of Online Courses in Research Ethics in the Fogarty-Sponsored Bioethics Training Programs

PubMed Central

Silverman, Henry; Strosberg, Martin; Luna, Florencia; Philpott, Sean; Hemmerle, Cheryl A.

2014-01-01

Several training programs sponsored by the NIH/Fogarty International Center’s International Research Ethics Education and Curriculum Development Program offer online graduate-level courses in research ethics to participants in low- and middle-income countries. This paper describes the evaluation of four of these online courses and recommendations for improvements to achieve the highest-quality design and delivery. We used an evaluation matrix consisting of 95 criteria based on recommended best practices in eLearning. Our results showed that these courses are developing or meeting nearly 73% of the criteria, while they are not meeting approximately 21% of the criteria. Together, one or more of the courses are developing or meeting 89 of the 95 criteria. These results suggest that the necessary skills and expertise exist in these programs to bring all of the eLearning courses close to 100% proficiency by sharing a common set of best practices. This paper is part of a collection of articles analyzing the Fogarty International Center’s International Research Ethics Education and Curriculum Development Program. PMID:24384517

Variability in research ethics review of cluster randomized trials: a scenario-based survey in three countries

PubMed Central

2014-01-01

Background Cluster randomized trials (CRTs) present unique ethical challenges. In the absence of a uniform standard for their ethical design and conduct, problems such as variability in procedures and requirements by different research ethics committees will persist. We aimed to assess the need for ethics guidelines for CRTs among research ethics chairs internationally, investigate variability in procedures for research ethics review of CRTs within and among countries, and elicit research ethics chairs’ perspectives on specific ethical issues in CRTs, including the identification of research subjects. The proper identification of research subjects is a necessary requirement in the research ethics review process, to help ensure, on the one hand, that subjects are protected from harm and exploitation, and on the other, that reviews of CRTs are completed efficiently. Methods A web-based survey with closed- and open-ended questions was administered to research ethics chairs in Canada, the United States, and the United Kingdom. The survey presented three scenarios of CRTs involving cluster-level, professional-level, and individual-level interventions. For each scenario, a series of questions was posed with respect to the type of review required (full, expedited, or no review) and the identification of research subjects at cluster and individual levels. Results A total of 189 (35%) of 542 chairs responded. Overall, 144 (84%, 95% CI 79 to 90%) agreed or strongly agreed that there is a need for ethics guidelines for CRTs and 158 (92%, 95% CI 88 to 96%) agreed or strongly agreed that research ethics committees could be better informed about distinct ethical issues surrounding CRTs. There was considerable variability among research ethics chairs with respect to the type of review required, as well as the identification of research subjects. The cluster-cluster and professional-cluster scenarios produced the most disagreement. Conclusions Research ethics committees identified a clear need for ethics guidelines for CRTs and education about distinct ethical issues in CRTs. There is disagreement among committees, even within the same countries, with respect to key questions in the ethics review of CRTs. This disagreement reflects variability of opinion and practices pointing toward possible gaps in knowledge, and supports the need for explicit guidelines for the ethical conduct and review of CRTs. PMID:24495542

Good collaborative practice: reforming capacity building governance of international health research partnerships.

PubMed

Ward, Claire Leonie; Shaw, David; Sprumont, Dominique; Sankoh, Osman; Tanner, Marcel; Elger, Bernice

2018-01-08

In line with the policy objectives of the United Nations Sustainable Development Goals, this commentary seeks to examine the extent to which provisions of international health research guidance promote capacity building and equitable partnerships in global health research. Our evaluation finds that governance of collaborative research partnerships, and in particular capacity building, in resource-constrained settings is limited but has improved with the implementation guidance of the International Ethical Guidelines for Health-related Research Involving Humans by The Council for International Organizations of Medical Sciences (CIOMS) (2016). However, more clarity is needed in national legislation, industry and ethics guidelines, and regulatory provisions to address the structural inequities and power imbalances inherent in international health research partnerships. Most notably, ethical partnership governance is not supported by the principal industry ethics guidelines - the International Conference on Harmonization Technical Requirements for Registration of Pharmaceutical for Human Use (ICH) Good Clinical Practice (ICH-GCP). Given the strategic value of ICH-GCP guidelines in defining the role and responsibility of global health research partners, we conclude that such governance should stipulate the minimal requirements for creating an equitable environment of inclusion, mutual learning, transparency and accountability. Procedurally, this can be supported by i) shared research agenda setting with local leadership, ii) capacity assessments, and iii) construction of a memorandum of understanding (MoU). Moreover, the requirement of capacity building needs to be coordinated amongst partners to support good collaborative practice and deliver on the public health goals of the research enterprise; improving local conditions of health and reducing global health inequality. In this respect, and in order to develop consistency between sources of research governance, ICH-GCP should reference CIOMS ethical guidelines as the established standard for collaborative partnership. Moreover, greater commitment and support should be given to co-ordinate, strengthen and enforce local laws requiring equitable research partnerships and health system strengthening.

Ethical standards for mental health and psychosocial support research in emergencies: review of literature and current debates.

PubMed

Chiumento, Anna; Rahman, Atif; Frith, Lucy; Snider, Leslie; Tol, Wietse A

2017-02-08

Research in emergencies is needed to understand the prevalence of mental health and psychosocial problems and strengthen the evidence base for interventions. All research - including operational needs assessments, programme monitoring and evaluation, and formal academic research - must be conducted ethically. While there is broad consensus on fundamental principles codified in research ethics guidelines, these do not address the ethical specificities of conducting mental health and psychosocial support (MHPSS) research with adults in emergencies. To address this gap, this paper presents a review of multidisciplinary literature to identify specific ethical principles applicable to MHPSS research in emergencies. Fifty-nine sources meeting the literature review inclusion criteria were analysed following a thematic synthesis approach. There was consensus on the relevance of universal ethical research principles to MHPSS research in emergencies, including norms of participant informed consent and protection; ensuring benefit arises from research participation; researcher neutrality, accountability, and safety; and the duty to ensure research is well designed and accounts for contextual factors in emergency settings. We go onto discuss unresolved issues by highlighting six current debates relating to the application of ethics in emergency settings: (1) what constitutes fair benefits?; (2) how should informed consent be operationalised?; (3) is there a role for decision making capacity assessments?; (4) how do risk management approaches impact upon the construction of ethical research?; (5) how can ethical reflection best be achieved?, and (6) are ethical review boards sufficiently representative and equipped to judge the ethical and scientific merit of emergency MHPSS research? Underlying these debates is a systemic tension between procedural ethics and ethics in practice. In summary, underpinning the literature is a desire to ensure the protection of participants exposed to emergencies and in need of evidence-based MHPSS. However, there is a lack of agreement on how to contextualise guidelines and procedures to effectively maximise the perspectives of researchers, participants and ethical review boards. This is a tension that the field must address to strengthen ethical MHPSS research in emergencies.

Perceptions and practices of medical practitioners towards ethics in medical practice - a study from coastal South India.

PubMed

Unnikrishnan, B; Kanchan, Tanuj; Kulkarni, Vaman; Kumar, Nithin; Papanna, Mohan Kumar; Rekha, T; Mithra, Prasanna

2014-02-01

Ethics is the application of values and moral rules to human activities. Medical practitioners are expected to not only have the skills and knowledge relevant to their field but also with the ethical and legal expectations that arise out of the standard practices. The present research was conducted with an aim to study the perceptions and practices of medical practitioners towards healthcare ethics in Indian scenario and to strengthen the evidence in the field of ethics training. A cross-sectional study was carried out in three associate hospitals of a Medical College in Southern India. Medical practitioners included in the study were administered a pre-tested, semi-structured questionnaire. Data was collected based on their responses on a 5 point Likert scale and analyzed using SPSS version 11.5. The majority of the participants mentioned that their perceptions of ethics in medical practice were based on information obtained during their undergraduate training, followed by experience at work. The medical practitioners had a positive perception on issues relating to consent in medical practice. However, the same degree of perception was not observed for issues related to confidentiality and their dealing with patients during emergency conditions. The majority of the medical practitioners agreed that ethical conduct is important to avoid legal and disciplinary actions. Among the medical practitioners, the responses of specialists and non-specialists were mostly similar with major differences of opinion for a few issues. A highest level of knowledge, awareness and understanding of ethics are expected in medical practice as it is the foundation of sound healthcare delivery system. Copyright © 2013 Elsevier Ltd and Faculty of Forensic and Legal Medicine. All rights reserved.

Nursing students' responses to ethical dilemmas in nursing practice.

PubMed

Dierckx de Casterlé, B; Grypdonck, M; Vuylsteke-Wauters, M; Janssen, P J

1997-01-01

In literature as well as in nursing practice a growing concern about nurses' ethical competence can be observed. Based on the cognitive theory of moral development by Kohlberg, this research examined nursing students' ethical behaviour in five nursing dilemmas. Ethical behaviour refers not only to the ethical reasoning of nursing students but also to the relationship between reasoning and behaviour. Kohlberg's definition of morality was refined by adding a care perspective. The results show that the majority of students can be located in the fourth moral stage according to Kohlberg's theory, that is, the conventional level of moral development. This finding implies that students are still guided by professional rules, norms and duties, and have not (yet) succeeded in making personal ethical decisions on the basis of their own principles and acting according to such decisions.

Pursuing an Ethical, Socially Just Classroom: Searching for Community Psychology Pedagogy.

PubMed

Lichty, Lauren F; Palamaro-Munsell, Eylin

2017-12-01

Discussions of community psychology (CP) ethics often examine how we might best uphold CP values in community-based practice. However, for many community psychologists in faculty positions, our main domain of practice is the undergraduate classroom. Teaching is essential to the growth and sustainability of our field as prospective students tend to discover CP during their undergraduate studies. University-based work is also a key site of CP practice. Universities are contested spaces where interlocking forms of oppression manifest in many ways, including teaching (e.g., what is taught, how, by whom, to whom). CP values compel us to treat our classrooms as more than just information transmission spaces; just as there is no value-neutral research, there is no value-neutral course content or classroom practice. This first-person narrative explores ethical issues that arise when we put CP values, specifically social justice, respect for diversity, participation, and wellness, in conversation with pedagogical best practices and course content in higher education. It presents interrelated ethical dilemmas and the authors' conflicted responses. We conclude with a four-part call to the field for dedicated scholarly spaces and supports focused on the development and study of undergraduate CP pedagogy. © Society for Community Research and Action 2017.

Need for an Ethical Framework for Testing for Systemic Diseases in Dental Clinics

PubMed Central

Silveira, Marushka Leanne; Chattopadhyay, Amit

2012-01-01

Testing for systemic diseases in dental clinics is a potentially attractive avenue for oral health professionals and may be viewed as an opportunity to increase professional reach, expand practice, and improve financial returns. However, several ethical questions arise that must be addressed before such activities are adopted. (1) What should be the level of training dentists must acquire to deal with challenges associated with testing? (2) How well are dental practices aware of and compliant with the Health Insurance Portability and Accountability Act and procedures related to informed consent? (3) What is the evidence regarding acceptability and effectiveness of testing? (4) What should be the acceptable standard of practice for conduct of invasive and noninvasive tests? (5) What is the boundary delineating “testing” and “reporting” vis-à-vis counseling? (6) What is the value of testing without counseling? (7) What assurances need to be in place to ensure voluntariness of testing? (8) How would data from testing be used in “research,” especially with the growth of practice based research networks? and (9) Does the American Dental Association Code of Ethics need to incorporate guidance for practicing dentists? We discuss how ethical principles can be used to develop a framework of guidelines for potential testing for systemic diseases in dental clinics.. PMID:24600534

Teaching GeoEthics Across the Geoscience Curriculum

NASA Astrophysics Data System (ADS)

Mogk, D. W.; Geissman, J. W.; Kieffer, S. W.; Reidy, M.; Taylor, S.; Vallero, D. A.; Bruckner, M. Z.

2014-12-01

Ethics education is an increasingly important component of the pre-professional training of geoscientists. Funding agencies (NSF) require training of graduate students in the responsible conduct of research, employers are increasingly expecting their workers to have basic training in ethics, and the public demands that scientists abide by the highest standards of ethical conduct. Yet, few faculty have the requisite training to effectively teach about ethics in their classes, or even informally in mentoring their research students. To address this need, an NSF-funded workshop was convened to explore how ethics education can be incorporated into the geoscience curriculum. Workshop goals included: examining where and how geoethics topics can be taught from introductory courses for non-majors to modules embedded in "core" geoscience majors courses or dedicated courses in geoethics; sharing best pedagogic practices for "what works" in ethics education; developing a geoethics curriculum framework; creating a collection of online instructional resources, case studies, and related materials; applying lessons learned about ethics education from sister disciplines (biology, engineering, philosophy); and considering ways that geoethics instruction can contribute to public scientific literacy. Four major themes were explored in detail: (1) GeoEthics and self: examining the internal attributes of a geoscientist that establish the ethical values required to successfully prepare for and contribute to a career in the geosciences; (2) GeoEthics and the geoscience profession: identifying ethical standards expected of geoscientists if they are to contribute responsibly to the community of practice; (3) GeoEthics and society: exploring geoscientists' responsibilities to effectively and responsibly communicate the results of geoscience research to inform society about issues ranging from geohazards to natural resource utilization in order to protect public health, safety, and economic security; (4) GeoEthics and Earth: explicating geoscientists' responsibilities to provide stewardship towards of the Earth based on their knowledge of Earth's composition, architecture, history, dynamic processes, and complex systems. Workshop resources can be accessed at serc.carleton.edu/geoethics/

Research and developing countries: hopes and hypes.

PubMed

Moazam, Farhat

2006-01-01

The paper outlines the universal problem of ensuring ethical practices in human subject research, and focuses on specific difficulties faced in the developing world with particular reference to Pakistan. It discusses the influence of traditional and hierarchical social norms of physician-patient relationships in heightening these problems. Two emerging issues of specific concern in Pakistan are described: an exponential rise in multinational clinical drug trials, and commercial ventures offering unproven stem cell "therapy" for all kinds of diseases. The importance of introducing ethical practices in research within the context of local cultural and socioeconomic realities is highlighted.

Evaluating Research Ethics Training in the Maryland Sea Grant REU Program

NASA Astrophysics Data System (ADS)

Allen, M. R.; Kumi, G. A.; Kumi, B. C.; Moser, F. C.

2016-02-01

The NSF's Research Experiences for Undergraduates (REU) program is an opportunity to cultivate responsible research practices in researchers at an early stage in their career. However, teaching responsible research conduct and science ethics in this program has been challenging because of a lack of consensus regarding which instructional methods are most effective for educating students about ethical concepts and establishing the process of ethical decision-making. Over the last 15 years, Maryland Sea Grant's REU ethics program has evolved by exploring different teaching models and looking for ways to effectively engage upper level undergraduates throughout their summer experience in ethical responsibility training. Since 2007, we have adopted a concerted experiential learning approach that includes an ethics seminar, role playing, case studies, and reflection. Currently, our summer long ethics training includes: 1) an interactive seminar; 2) a workshop with role playing and case studies; 3) 1-2 readings; and 4) a roundtable discussion with faculty mentors and their mentees to discuss researchers' real-world experiences with ethical dilemmas. Within the last 3 years, we have expanded our student learning outcomes assessments by administering pre- and post-program surveys to assess ethical skills students acquire through the program. Reevaluations administered three and six years after the REU experience will measure long term effectiveness of the training. Results from the first group of students reveal a greater awareness of ethical issues following our summer program. Students show a high level of competence about "black and white" issues (falsification, fabrication, plagiarism), but are more challenged by ethical "gray areas" such as data ownership and authorship. Results suggest many undergraduates come to research programs with basic ethics training, but benefit from our additional focus on complex ethical dilemmas.

MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research.

PubMed

Gysels, Marjolein; Evans, Catherine J; Lewis, Penney; Speck, Peter; Benalia, Hamid; Preston, Nancy J; Grande, Gunn E; Short, Vicky; Owen-Jones, Eleanor; Todd, Chris J; Higginson, Irene J

2013-12-01

There is little guidance on the particular ethical concerns that research raises with a palliative care population. To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria.

PubMed

Folayan, Morenike Oluwatoyin; Peterson, Kristin; Haire, Bridget; Brown, Brandon; Audu, Kadiri; Makanjuola, Olumide; Pelemo, Babatunde; Marsh, Vicki

2015-12-01

HIV prevention is a critical health issue in Nigeria; a country that has one of the worst HIV epidemic profiles in the world. With 270,000 new infections in 2012, Nigeria is a prime site for HIV prevention research. One effect of the HIV epidemic has been to revolutionalise ethical norms for the conduct of research: it is now considered unethical to design and implement HIV related studies without community engagement. Unfortunately, there is very little commensurate effort in building the capacity of local persons to engage actively with researchers, and there is no existing platform to facilitate dialogue between researchers and communities engaged in research in Nigeria. In an effort to address this gap, we undertook a series of three community dialogues (Phase One) and two community-researcher interface meetings (Phase Two) in Nigeria. This paper aims to give an empirical account of the dialogue from these community engagement processes and provide a resulting critique of the implementation of research ethics practices in Nigeria. It is anticipated that the outputs will: (i) support researchers in designing community-based research protocols; (ii) inform ethics committees of key considerations during research protocol reviews from a community perspective; and (iii) inform policy makers and research sponsors about issues of primary concern to communities with respect to HIV research. © 2014 John Wiley & Sons Ltd.

Antecedents of ethical decision-making: intercollegiate sporting environments as clinical education and practice settings.

PubMed

Caswell, Shane V; Ambegaonkar, Jatin P; Caswell, Amanda M; Gould, Trenton E

2009-01-01

Unique among allied health care professions, athletic training is predominately practiced amid competitive intercollegiate sports. Competitive sporting environments have been suggested to adversely impact morality, ethical decision-making (EDM), and behavior. The purposes of this study were to (1) investigate the effect of institutional National Collegiate Athletic Association (NCAA) participation level on preferred ethical ideologies and EDM, (2) determine the relationship between professional status (athletic training student [ATS] or certified athletic trainer [ATC]) and ethical ideology preferences and EDM, and (3) examine whether preferred ethical ideology is related to differences in EDM. A nationally representative sample of 610 ATSs and ATCs from 30 athletic training education programs, stratified by NCAA division level, participated in the study. All participants completed a demographic survey, the Ethics Position Questionnaire, and the Dilemmas in Athletic Training Questionnaire. No significant relationships were noted between NCAA participation level and respondents' ethical ideology preferences. However, ATSs and ATCs demonstrated significant preferences for specific ethical ideologies, with students adopting the subjectivist ideology more than expected and the exceptionist ideology less than expected and ATCs adopting the exceptionist ideology more than expected and the situationist ideology less than expected. In contrast to some previous research, our results suggest that competitive sporting environments do not affect ATSs' and ATCs' ethical ideology and EDM abilities at the collegiate level. These findings serve as a baseline for future research examining the ethical ideologies and ethical decision-making levels of athletic training practitioners and other allied health professionals across clinical settings.

Rethinking Research Ethics: The Case of Postmarketing Trials

PubMed Central

London, Alex John; Carlisle, Benjamin

2015-01-01

Phase IV studies are often criticized for poor scientific standards. Yet they provide an important resource for addressing evidence shortfalls in drug safety, comparative effectiveness, and real-world utility. Current research ethics policies, and contemplated revisions to them, do not provide an adequate framework for preventing social harms that result from poor post-marketing research practice. Rather than focus exclusively on the welfare and interests of human volunteers, research policies and ethics should also safeguard the integrity of the research enterprise as a system for producing reliable medical evidence. We close by briefly describing how an integrity framework might be implemented for phase IV studies. PMID:22556237

From bench to bedside and to health policies: ethics in translational research.

PubMed

Petrini, C

2011-01-01

Translation of biomedical research knowledge to effective clinical treatment is essential to the public good. The first level of translation ("from bench to bedside") corresponds to efficacy studies under controlled conditions with careful attention to internal validity (clinical research). The second level is the translation of results from clinical studies into everyday clinical practice and health decision making. The article summarises the ethical issues involved in the translation of biomedical research advances to clinical applications and to clinical practice. In particular, the article synthesizes theory from clinical ethics, operational design, and philosophy to examine the unique bioethical issues raised by the recent focus on translational research. In this framework safety of study participants and balancing of risk due to treatment with the potential benefits of the research are crucial: in clinical research there is a danger that the emphasis on advancements in scientific knowledge might prevail over the protection of the people who participate in research. These issues involve basic scientists, clinicians and bioethicists because of their application to comparative effectiveness research, clinical trials and evidence-based medicine, as well basic biomedical research.

Barriers to Considering Ethical and Societal Implications of Research: Perceptions of Life Scientists.

PubMed

McCormick, Jennifer Blair; Boyce, Angie M; Ladd, Jennifer M; Cho, Mildred

2012-01-01

BACKGROUND: As part of an empirical study investigating how life scientists think about ethical and societal implications of their work, and about life science research in general, we sought to elucidate barriers that scientists might face in considering such implications. METHOD: Between 2005 and 2007, we conducted a study consisting of phone interviews, focus groups, and a national survey of life scientists at biomedical research institutions. The study population included graduate students, postdoctoral fellows, faculty, clinical instructors, and research staff. We analyzed data through qualitative and quantitative methods. RESULTS: In analyzing the data, we found that life scientists do, in fact, face barriers to considering ethical and societal implications of research. We categorized these barriers as falling into four broad domains: (1) lack of awareness of ethical and societal implications; (2) lack of relevance of such concerns to their specific research; (3) self-confidence in their ability to resolve such concerns; and (4) aspects of the daily practice of science itself. CONCLUSIONS: Life science researchers experience elements inherent in their training and in the conduct of science as barriers to thinking about ethical and societal implications related to their work. These findings suggest areas in which research ethics educators, bioethicists, and the scientific community can focus their efforts to improve social and ethical accountability in research.

“Just one animal among many?” Existential phenomenology, ethics, and stem cell research

PubMed Central

2010-01-01

Stem cell research and associated or derivative biotechnologies are proceeding at a pace that has left bioethics behind as a discipline that is more or less reactionary to their developments. Further, much of the available ethical deliberation remains determined by the conceptual framework of late modern metaphysics and the correlative ethical theories of utilitarianism and deontology. Lacking, to any meaningful extent, is a sustained engagement with ontological and epistemological critiques, such as with “postmodern” thinking like that of Heidegger’s existential phenomenology. Some basic “Heideggerian” conceptual strategies are reviewed here as a way of remedying this deficiency and adding to ethical deliberation about current stem cell research practices. PMID:20521117

Fitting Square Pegs into round Holes: Doing Qualitative Nursing Research in a Quantitative World.

PubMed

Newton, Lorelei; Kimpson, Sally

2014-09-01

The authors, as doctoral candidates and registered nurses, took on a qualitative research project investigating nursing practice in a research-intensive organization. Their aims were to explore and describe how nurses in the ambulatory care setting assist patients and families, including how nursing practice was carried out, constraints to practice, and the influence of the interprofessional milieu. Their first finding, in part because of the qualitative research design used, concerned the potential impact of the organizational ethics review process on the project. The authors discuss how the language, definition of risk, and notion of informed consent articulated in the organizational review process influenced both the research timeline and (potentially) the study itself. While not dismissing the value of ethics review, they explore the tension of overlaying generic criteria for quantitative research, specifically randomized controlled trials, on nursing research from other traditions. Copyright© by Ingram School of Nursing, McGill University.

The Nature of Practitioner Research: Critical Distance, Power and Ethics

ERIC Educational Resources Information Center

Appleby, Michelle M.

2013-01-01

Researching within one's place of practice allows the researcher to have the unique position of knowing the participants and the research context. The relationship the participants have with the researcher will impact upon the disclosure of information differently than research conducted by someone outside the area of practice. This can be a…

Psychiatry during the Nazi era: ethical lessons for the modern professional

PubMed Central

Strous, Rael D

2007-01-01

For the first time in history, psychiatrists during the Nazi era sought to systematically exterminate their patients. However, little has been published from this dark period analyzing what may be learned for clinical and research psychiatry. At each stage in the murderous process lay a series of unethical and heinous practices, with many psychiatrists demonstrating a profound commitment to the atrocities, playing central, pivotal roles critical to the success of Nazi policy. Several misconceptions led to this misconduct, including allowing philosophical constructs to define clinical practice, focusing exclusively on preventative medicine, allowing political pressures to influence practice, blurring the roles of clinicians and researchers, and falsely believing that good science and good ethics always co-exist. Psychiatry during this period provides a most horrifying example of how science may be perverted by external forces. It thus becomes crucial to include the Nazi era psychiatry experience in ethics training as an example of proper practice gone awry. PMID:17326822

From "a Fair Game" to "a Form of Covert Research": Research Ethics Committee Members' Differing Notions of Consent and Potential Risk to Participants Within Social Media Research.

PubMed

Hibbin, R A; Samuel, G; Derrick, G E

2018-04-01

Social media (SM) research presents new challenges for research ethics committees (RECs) who must balance familiar ethical principles with new notions of public availability. This article qualitatively examines how U.K. REC members view this balance in terms of risk and consent. While it found significant variance overall, there were discernible experience-based trends. REC members with less experience of reviewing SM held inflexible notions of consent and risk that could be categorized as either relying on traditional notions of requiring direct consent, or viewing publicly available data as "fair game." More experienced REC members took a more nuanced approach to data use and consent. We conclude that the more nuanced approach should be best practice during ethical review of SM research.

Teaching Ethics and Social Responsibility: An Evaluation of Undergraduate Business Education at the Discipline Level

ERIC Educational Resources Information Center

Nicholson, Carolyn Y.; DeMoss, Michelle

2009-01-01

Organizations and society at large recognize that ethically and socially responsible behavior plays a crucial role in good business practices. This realization has led employers to expect and demand that business schools facilitate the training of students in ethics and social responsibility. However, research is mixed on how well business schools…

Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review.

PubMed

Golder, Su; Ahmed, Shahd; Norman, Gill; Booth, Andrew

2017-06-06

Although primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice. The aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers. A systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis. In total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only. Many conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions. ©Su Golder, Shahd Ahmed, Gill Norman, Andrew Booth. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 06.06.2017.

Ethical issues in research.

PubMed

Artal, Raul; Rubenfeld, Sheldon

2017-08-01

Biomedical research is currently guided by ethical standards that have evolved over many centuries. Historical and political events, social and legal considerations, and continuous medical and technological advances have led to the prevailing research ethics and practice. Currently, patients and research subjects have complete autonomy while under medical care or when volunteering as research subjects. Enrolling volunteers in human subjects research includes a detailed and meaningful informed consent process that follows the cardinal principles of ethics: autonomy, beneficence, nonmaleficence, and justice. These principles were gradually adopted after World War II, primarily in response to the unethical behavior of German physicians and scientists during the Third Reich. This review emphasizes the importance of historical milestones and the essential role that ethics has in contemporary medical research. Research protocols should achieve maximum benefits for the society, have clinical and scientific value, be subject to independent review, respect human dignity, and follow the principles of informed consent, and most importantly, subjects should have complete autonomy. However, current principles and regulations cannot cover every conceivable situation, particularly in view of the new advances in science and technology. New and evolving medical technology, genetic research, therapeutic interventions, and innovations challenge society to maintain the highest moral and ethical principles. Copyright © 2017. Published by Elsevier Ltd.

Navigating Ethics in the Digital Age: Introducing Connected and Open Research Ethics (CORE), a Tool for Researchers and Institutional Review Boards

PubMed Central

Torous, John

2017-01-01

Research studies that leverage emerging technologies, such as passive sensing devices and mobile apps, have demonstrated encouraging potential with respect to favorably influencing the human condition. As a result, the nascent fields of mHealth and digital medicine have gained traction over the past decade as demonstrated in the United States by increased federal funding for research that cuts across a broad spectrum of health conditions. The existence of mHealth and digital medicine also introduced new ethical and regulatory challenges that both institutional review boards (IRBs) and researchers are struggling to navigate. In response, the Connected and Open Research Ethics (CORE) initiative was launched. The CORE initiative has employed a participatory research approach, whereby researchers and IRB affiliates are involved in identifying the priorities and functionality of a shared resource. The overarching goal of CORE is to develop dynamic and relevant ethical practices to guide mHealth and digital medicine research. In this Viewpoint paper, we describe the CORE initiative and call for readers to join the CORE Network and contribute to the bigger conversation on ethics in the digital age. PMID:28179216

The Accountability-Well-Being-Ethics framework: a new philosophical foundation for occupational therapy.

PubMed

Taff, Steven D; Bakhshi, Parul; Babulal, Ganesh M

2014-12-01

The context that supported occupational therapy's inception has been replaced with new challenges brought on by globalization and dramatic changes in health care. Thus, the profession's philosophical grounding needs to be reframed to (a) achieve balance between science-driven and holistic elements, (b) operate within larger contexts on problems brought on by sociopolitical and natural determinants of health, and (c) maintain an ethical identity across all arenas of practice. This paper presents a brief discussion of the philosophical underpinnings in occupational therapy's history, outlines new global challenges for the profession, and proposes a new framework to address these challenges through education, practice, and research. Occupational therapy finds itself practising in a growing number of middle- and low-income countries where its roles and values need to be context and culture specific. The Accountability-Well-Being-Ethics framework guides the three domains of education, research, and practice to be relevant in an increasingly complex world.

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MedlinePlus

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Scaling ethics up and down: moral craft in clinical genetics and in global health research

PubMed Central

Parker, Michael

2015-01-01

This paper engages with the question of what it is to ‘do good medical ethics’ in two ways. It begins with an exploration of what it might mean to say that health professionals practise good medical ethics as part of practising good ethical medicine. Using the example of the Genethics Club, a well-established national ethics forum for genetics professionals in the UK, the paper develops an account of moral craftsmanship grounded in the concepts of shared moral commitments and practices, moral work, ethics and living morality. In the light of this discussion, the paper goes on to consider what it might mean for a specialist in medical ethics, a bioethicist, to do good medical ethics. Finally, a research agenda focusing on the challenges of thinking about good medical ethics in a global context and a proposal for an innovative approach to bioethics methodology is outlined. PMID:25516955

Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

PubMed Central

Ahmed, Shahd; Norman, Gill; Booth, Andrew

2017-01-01

Background Although primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice. Objective The aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers. Methods A systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis. Results In total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only. Conclusions Many conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions. PMID:28588006

Review of national research ethics regulations and guidelines in Middle Eastern Arab countries

PubMed Central

2012-01-01

Background Research ethics guidelines are essential for conducting medical research. Recently, numerous attempts have been made to establish national clinical research documents in the countries of the Middle East. This article analyzes these documents. Methods Thirteen Arab countries in the Middle East were explored for available national codes, regulations, and guidelines concerning research ethics, and 10 documents from eight countries were found. We studied these documents, considering the ethical principles stated in the Declaration of Helsinki, the Council for International Organizations of Medical Sciences (CIOMS) guidelines, and the International Conference of Harmonization - Guidelines for Good Clinical Practice (ICH-GCP). Our paper comprises a complete list of protections, such as confidentiality, informed consent, ethics committees, and others. Results This study found different levels and kinds of research ethics regulations and guidelines in the countries examined. Two groups can be distinguished: the countries in the first group have one or more research ethics regulations or guidelines, while the countries in the second group have not yet established any. Most of the documents showed various degrees of deficiencies in regard to ethical protection. The majority of the documents that were examined refer to one or more international documents on biomedical research ethics. Conclusions Recently, a lot of efforts have been made in many countries in the Middle East. However, compared with international documents, most of the research ethics documents in use in this region demonstrate numerous deficiencies. As it relates to these documents, extensive differences could be observed in regard to development, structure, content, and reference to international guidelines. PMID:23234422

National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden

PubMed Central

Gallagher, Bernard; Berman, Anne H.; Bieganski, Justyna; Jones, Adele D.; Foca, Liliana; Raikes, Ben; Schiratzki, Johanna; Urban, Mirjam; Ullman, Sara

2016-01-01

Although international research is increasing in volume and importance, there remains a dearth of knowledge on similarities and differences in “national human research ethics” (NHREs), that is, national ethical guidelines (NEGs), Institutional Review Boards (IRBs), and research stakeholder’ ethical attitudes and behaviors (EABs). We begin to address this situation by reporting upon our experiences in conducting a multinational study into the mental health of children who had a parent/carer in prison. The study was conducted in 4 countries: Germany, Great Britain, Romania, and Sweden. Data on NHREs were gathered via a questionnaire survey, two ethics-related seminars, and ongoing contact between members of the research consortium. There was correspondence but even more so divergence between countries in the availability of NEGs and IRBs and in researcher’ EABs. Differences in NHREs have implications particularly in terms of harmonization but also for ethical philosophy and practice and for research integrity. PMID:27746664

The ethics in qualitative health research: special considerations.

PubMed

Peter, Elizabeth

2015-09-01

A sound knowledge of the nature of qualitative research, along with an appreciation of some special ethical considerations, is needed for rigorous reviews to be conducted. The overall character of qualitative research is described with an emphasis on the tendency of qualitative researchers to explore sensitive topics using theoretically informed methods. A number of specific features of qualitative that require additional ethical attention and awareness are also examined including the following: 1) participants are frequently quite vulnerable and require protection because the data collection methods, such as in-depth interviews, can delve into personally and politically charged matters; 2) naturalistic observation can raise concerns regarding privacy and consent; 3) the potential for the identifiability of the results of this research may require extra efforts to maintain confidentiality. Ultimately, Reseach Ethics Committee members must be knowledgeable about qualitative approaches to be able to assess the potential harms and benefits in a protocol carefully. Without this knowledge gaining ethics approval can be overly difficult for researchers and the best practices for protecting human participants can be overlooked.

Early indicators and risk factors for ethical issues in clinical practice.

PubMed

Pavlish, Carol; Brown-Saltzman, Katherine; Hersh, Mary; Shirk, Marilyn; Nudelman, Olga

2011-03-01

Nurses in all clinical settings encounter ethical issues that frequently lead to moral distress. This critical incident study explored nurses' descriptions of ethically difficult situations to identify risk factors and early indicators of ethical conflicts. Employing the critical incident technique, researchers developed a questionnaire that collected information on ethically difficult situations, their risk factors and early indicators, nurse actions, and situational outcomes. Two nurse researchers independently analyzed and categorized data using a constant comparison technique. Most of the ethically difficult situations pertained to end-of-life care for children and adults. Conflicts in interpersonal relationships were prevalent. Nurses were especially moved by patient and family suffering and concerned about patient vulnerability, harm-benefit ratio, and patient autonomy. Researchers discovered risk factor categories for patients, families, healthcare providers, and health systems. Additionally, researchers found subcategories in six major categories of early indicators: signs of conflict, patient suffering, nurse distress, ethics violation, unrealistic expectations, and poor communication. Nurses are keenly aware of pertinent risk factors and early indicators of unfolding ethical conflicts. Many nurses reported feeling powerless in the face of ethical conflict. Research that develops interventions to strengthen nurses' voices in ethically difficult situation is warranted. Nurses are in a key position to identify patient situations with a high risk for ethical conflict. Initiating early ethics consultation and interventions can alter the course of pending conflicts and diminish the potential for patient and family suffering and nurses' moral distress. © 2011 Sigma Theta Tau International.

[Ethics and epidemiology].

PubMed

Barata, Rita Barradas

2005-01-01

Human actions take place at the confluence of circumstances that require us to discern the proper way to act. Ethics falls within the terrain of practical knowledge, of knowledge about what is contingent. It belongs to the domain of moral judgments or value judgments. The counterpart of disenchantment with our contemporary world lies in an effort to re-establish an interest in ethics. There are basically three orders of relations between public health and human rights: the quest for balance between the collective good and individual rights; methods and techniques for identifying human rights violations and assessing their negative impact; and the tie between protecting individual rights and promoting health. The relationship between ethics and epidemiology goes beyond the ethical aspects involving research on human beings to encompass political commitments, practices within health services, and the production of knowledge.

Worthwhile Work? Childcare, Feminist Ethics and Cooperative Research Practices

ERIC Educational Resources Information Center

Andrew, Yarrow; Corr, Lara; Lent, Connie; O'Brien, Maeve; Osgood, Jayne; Boyd, Margaret

2018-01-01

Interdisciplinary research collaborations are often encouraged within higher education while the practicalities of such collaborations are glossed over. This project specifically addresses the praxis of research collaborations, exploring how feminist academics within different countries and disciplines came together to explore their mutual concern…

Opportunity to discuss ethical issues during clinical learning experience.

PubMed

Palese, Alvisa; Gonella, Silvia; Destrebecq, Anne; Mansutti, Irene; Terzoni, Stefano; Morsanutto, Michela; Altini, Pietro; Bevilacqua, Anita; Brugnolli, Anna; Canzan, Federica; Ponte, Adriana Dal; De Biasio, Laura; Fascì, Adriana; Grosso, Silvia; Mantovan, Franco; Marognolli, Oliva; Nicotera, Raffaela; Randon, Giulia; Tollini, Morena; Saiani, Luisa; Grassetti, Luca; Dimonte, Valerio

2018-01-01

Undergraduate nursing students have been documented to experience ethical distress during their clinical training and felt poorly supported in discussing the ethical issues they encountered. Research aims: This study was aimed at exploring nursing students' perceived opportunity to discuss ethical issues that emerged during their clinical learning experience and associated factors. An Italian national cross-sectional study design was performed in 2015-2016. Participants were invited to answer a questionnaire composed of four sections regarding: (1) socio-demographic data, (2) previous clinical learning experiences, (3) current clinical learning experience quality and outcomes, and (4) the opportunity to discuss ethical issues with nurses in the last clinical learning experience (from 0 - 'never' to 3 - 'very much'). Participants and research context: Participants were 9607 undergraduate nursing students who were attending 95 different three-year Italian baccalaureate nursing programmes, located at 27 universities in 15 Italian regions. Ethical considerations: This study was conducted in accordance with the Human Subject Research Ethics Committee guidelines after the research protocol was approved by an ethics committee. Overall, 4707 (49%) perceived to have discussed ethical issues 'much' or 'very much'; among the remaining, 3683 (38.3%) and 1217 (12.7%) students reported the perception of having discussed, respectively, 'enough' or 'never' ethical issues emerged in the clinical practice. At the multivariate logistic regression analysis explaining 38.1% of the overall variance, the factors promoting ethical discussion were mainly set at the clinical learning environment levels (i.e. increased learning opportunities, self-directed learning, safety and nursing care quality, quality of the tutorial strategies, competences learned and supervision by a clinical nurse). In contrast, being male was associated with a perception of less opportunity to discuss ethical issues. Nursing faculties should assess the clinical environment prerequisites of the settings as a context of student experience before deciding on their accreditation. Moreover, the nursing faculty and nurse managers should also enhance competence with regard to discussing ethical issues with students among clinical nurses by identifying factors that hinder this learning opportunity in daily practice.

Hermeneutic application research - finding a common understanding and consensus on care and caring.

PubMed

Koskinen, Camilla; Nyström, Lisbet

2017-03-01

To clinically and contextually implement the theoretical and factual knowledge of care and caring that has been developed in the last 30 years is seen as a great challenge in caring science research. Emphasis has been put on problem-solving research methodologies and action research in hopes of narrowing the divide between caring theory and clinical practice. Thus, the intention is now to further action research towards a hermeneutic approach and to put emphasis on hermeneutic application where theory and praxis become one through human dialogue. This article highlights hermeneutic application research as an alternative methodology within participatory-oriented research which presents a new opportunity to unite clinical practice and caring theory. The aim is to contribute to the development of the hermeneutical application research design in its epistemological, ontological and ethical perspective, by articulating and clarifying the central foundations in the application. On the basis of Gadamer's hermeneutical thinking and Levinas ethical thinking, the central foundations in the application research are ethics, creation of a hermeneutical room, dialogue and common understanding and appropriation and action. When theoretical understanding turns into praxis, knowledge also becomes activity and theory and practice become one. Application thus realises the basic idea that praxis and theory are one, and thus, theory of caring can only become evident and implemented in a clinical practice through moments when the participants find a common understanding and consensus on the knowledge of care and caring. © 2015 Nordic College of Caring Science.

Ethics in oncology: consulting for the investment industry.

PubMed

Berlin, Jordan; Bruinooge, Suanna S; Tannock, Ian F

2007-02-01

As Ethics Committee Chair, I am pleased to introduce the first in an ongoing series of ethics vignettes. These columns, which are based on true-to-life situations that arise in oncology research and practice, are intended to identify and explore important ethical issues and provide commentary that is specific to oncology. Please look for them periodically in both the Journal of Clinical Oncology and the Journal of Oncology Practice. The idea for publishing vignettes evolved through the joint efforts of the Ethics Committee and the Board of Directors. Rather than adopt a single set of ethical principles that applies vaguely to any situation and well to none, the Committee and the Board preferred to tackle ethical dilemmas individually, specifically, and directly. Because the Ethics Committee thought the ethical and legal implications of physician interactions with the investment industry were so important and timely, it chose to address this topic in both a position article, which was previously published in the January 20, 2007, issue of the Journal of Clinical Oncology (J Clin Oncol 25:338-340, 2007) and in its first vignette column. The Ethics Committee hopes this column will be the first of several that ASCO members will find helpful as they grapple with the many ethical issues that arise in daily practice in the field of oncology. Because these columns are intended to address the concerns of ASCO members, the Committee welcomes suggestions for future topics at vignettes@asco.org. Martin D. Abeloff, MD, Chair, Ethics Committee.

In the Picture or off the Wall? Ethical Regulation, Research Habitus, and Unpeopled Ethnography

ERIC Educational Resources Information Center

Hurdley, Rachel

2010-01-01

This article focuses on two unintended consequences of ethical regulation of social enquiry: the exclusion of participants and, subsequently, a transformation of research practice. An ethnography of corridor life in a large university building forms the basis of the discussion. Originally intended as a pilot for a broader study of informal…

Beyond individualism: Is there a place for relational autonomy in clinical practice and research?

PubMed

Dove, Edward S; Kelly, Susan E; Lucivero, Federica; Machirori, Mavis; Dheensa, Sandi; Prainsack, Barbara

2017-09-01

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of 'relational autonomy' in particular have argued that people's identities, needs, interests - and indeed autonomy - are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person's care and responsibility for connected others.

Ethical concerns and dilemmas of Finnish and Dutch health professionals.

PubMed

Hopia, Hanna; Lottes, Ilsa; Kanne, Mariël

2016-09-01

Healthcare professionals encounter ethical dilemmas and concerns in their practice. More research is needed to understand these ethical problems and to know how to educate professionals to respond to them. To describe ethical dilemmas and concerns at work from the perspectives of Finnish and Dutch healthcare professionals studying at the master's level. Exploratory, qualitative study that used the text of student online discussions of ethical dilemmas at work as data. Participants' online discussions were analyzed using inductive content analysis. The sample consisted of 49 students at master's level enrolled in professional ethics courses at universities in Finland and the Netherlands. Permission for conducting the study was granted from both universities of applied sciences. All students provided their informed consent for the use of their assignments as research data. Participants described 51 problematic work situations. Among these, 16 were found to be ethical dilemmas, and the remaining were work issues with an ethical concern and did not meet criteria of a dilemma. The most common problems resulted from concerns about quality care, safety of healthcare professionals, patients' rights, and working with too few staff and inadequate resources. The results indicated that participants were concerned about providing quality of care and raised numerous questions about how to provide it in challenging situations. The results show that it was difficult for students to differentiate ethical dilemmas from other ethical work concerns. Online discussions among healthcare providers give them an opportunity to relate ethical principles to real ethical dilemmas and problems in their work as well as to critically analyze ethical issues. We found that discussions with descriptions of ethical dilemmas and concerns by health professionals provide important information and recommendations not only for education and practice but also for health policy. © The Author(s) 2015.

Ethical research on the implementation of DRGs in Switzerland--a challenging project.

PubMed

Wild, Verina; Pfister, Eliane; Biller-Andorno, Nikola

2012-08-09

Diagnosis Related Groups (DRGs) are currently being introduced on a national scale as a prospective reimbursement scheme in Swiss in-patient hospital care, replacing any remaining retrospective day-rate arrangements. DRGs are expected to promote transparency and efficiency while helping to contain health care costs. The governmental decision to introduce DRGs has caused considerable controversy among different stakeholders, due to diverging appraisals of what will happen when DRGs are introduced as an economic management tool in Switzerland. The controversial discourse on DRGs is particularly interesting from an ethical point of view, since all arguments inevitably contain ethical considerations. In this paper we summarise the results of our exploratory ethical studies that have led to a larger research project funded by the Swiss National Science Foundation: "Impact of Diagnosis-Related Groups (DRGs) on patient care and professional practice" (IDoC). In section 1: 'Developing an understanding of the ethical issues at stake' we briefly explain how DRGs work, what the intended effects are, what the public is concerned about and what the scientific research tells us so far. In section 2: 'Developing an ethical framework for research on DRGs in Switzerland' we summarise the ethical issues and explain the ethical framework we will use in order to perform research on the complex issue of DRGs in Switzerland. Only once a profound understanding of the challenges exists can research on the ethical implications of DRGs be successful.

Ethics interventions for healthcare professionals and students: A systematic review.

PubMed

Stolt, Minna; Leino-Kilpi, Helena; Ruokonen, Minka; Repo, Hanna; Suhonen, Riitta

2018-03-01

The ethics and value bases in healthcare are widely acknowledged. There is a need to improve and raise awareness of ethics in complex systems and in line with competing needs, different stakeholders and patients' rights. Evidence-based strategies and interventions for the development of procedures and practice have been used to improve care and services. However, it is not known whether and to what extent ethics can be developed using interventions. To examine ethics interventions conducted on healthcare professionals and healthcare students to achieve ethics-related outcomes. A systematic review. Five electronic databases were searched: CINAHL, the Cochrane Library, Philosopher's Index, PubMed and PsycINFO. We searched for published articles written in English without a time limit using the keywords: ethic* OR moral* AND intervention OR program OR pre-post OR quasi-experimental OR rct OR experimental AND nurse OR nursing OR health care. In the four-phased retrieval process, 23 full texts out of 4675 citations were included in the review. Data were analysed using conventional content analysis. Ethical consideration: This systematic review was conducted following good scientific practice in every phase. It is possible to affect the ethics of healthcare practices through professionals and students. All the interventions were educational in type. Many of the interventions were related to the ethical or moral sensitivity of the professionals, such as moral courage and empowerment. A few of the interventions focused on identifying ethical problems or research ethics. Patient-related outcomes followed by organisational outcomes can be improved by ethics interventions targeting professionals. Such outcomes are promising in developing ethical safety for healthcare patients and professionals.

Emerging issues in paediatric health research consent forms in Canada: working towards best practices.

PubMed

Dove, Edward S; Avard, Denise; Black, Lee; Knoppers, Bartha M

2013-01-30

Obtaining a research participant's voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements. Employing a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008-2011, which were purposively selected to reflect different types of research ethics boards, participants, and studies. The studies included biobanking, longitudinal studies, and gene-environment studies. Our purpose was to explore the following six emerging issues: (1) whether the scope of parental consent allows for a child's assent, dissent, or future consent; (2) whether the concepts of risk and benefit incorporate the child's psychological and social perspective; (3) whether a child's ability to withdraw is respected and to what extent withdrawal is permitted; (4) whether the return of research results includes individual results and/or incidental findings and the processes involved therein; (5) whether privacy and confidentiality concerns adequately address the child's perspective and whether standard data and/or sample identifiability nomenclature is used; and (6) whether retention of and access to paediatric biological samples and associated medical data are addressed. The review suggests gaps and variability in the consent forms with respect to addressing each of the six issues. Many forms did not discuss the possibility of returning research results, be they individual or general/aggregate results. Forms were also divided in terms of the scope of parental consent (specific versus broad), and none discussed a process for resolving disputes that can arise when either the parents or the child wishes to withdraw from the study. The analysis provides valuable insight and evidence into how consent forms address current ethical issues. While we do not thoroughly explore the contexts and reasons behind consent form gaps and variability, we do advocate and formulate the development of best practices for drafting paediatric health research consent forms. This can greatly ameliorate current gaps and facilitate harmonised and yet contextualised approaches to paediatric health research ethics.

DEVELOPING A PROBLEM-BASED LEARNING (PBL) CURRICULUM FOR PROFESSIONALISM AND ETHICS TRAINING FOR BIOMEDICAL GRADUATE STUDENTS

PubMed Central

Jones, Nancy L.; Peiffer, Ann M.; Lambros, Ann; Guthold, Martin; Johnson, A. Daniel; Tytell, Michael; Ronca, April E.; Eldridge, J. Charles

2013-01-01

A curriculum was designed to shape biomedical graduate students into researchers with a high commitment to professionalism and social responsibility, and to provide students with tools to navigate the complex, rapidly evolving academic and societal environments with a strong ethical commitment. Problem-Based Learning (PBL) pedagogy was chosen because it is active, learner-centered, and focuses on skill and process development. Additionally, the small group format provides a high degree of socialization around professional norms. Two courses were developed. Scientific Professionalism Scientific Integrity addressed discipline-specific and broad professional norms and obligations for the ethical practice of science and responsible conduct of research (RCR). Scientific Professionalism Bioethics and Social Responsibility focused on current ethical and bioethical issues within the scientific profession and implications of research for society. Each small-group session examined case scenarios that included: (1) learning objectives for professional norms and obligations; (2) key ethical issues and philosophies within each topic area; (3) one or more of the RCR instructional areas; and (4) at least one type of moral reflection. Cases went beyond covering overt research misconduct to emphasize professional standards, obligations, and underlying philosophies for the ethical practice of science, competing interests of stakeholders, and oversight of science (internal and external). To our knowledge this was the first use of PBL to teach scientific integrity and ethics. Both faculty and students at Wake Forest endorsed the orientation of professionalism, active learning, and acquiring skills in contrast to a compliance-based approach that emphasizes learning rules and regulations. PMID:20797979

Challenges in the research ethics review of cluster randomized trials: international survey of investigators.

PubMed

Chaudhry, Shazia H; Brehaut, Jamie C; Grimshaw, Jeremy M; Weijer, Charles; Boruch, Robert; Donner, Allan; Eccles, Martin P; McRae, Andrew D; Saginur, Raphael; Skea, Zoë C; Zwarenstein, Merrick; Taljaard, Monica

2013-04-01

Cluster randomized trials (CRTs) complicate the interpretation of standard research ethics guidelines for several reasons. For one, the units of allocation, intervention, and observation often may differ within a single trial. In the absence of tailored and internationally accepted ethics guidelines for CRTs, researchers and research ethics committees have no common standard by which to judge ethically appropriate practices in CRTs. Moreover, lack of familiarity with and consideration of the unique features of the CRT design by research ethics committees may cause difficulties in the research ethics review process, and amplify problems such as variability in the requirements and decisions reached by different research ethics committees. We aimed to characterize research ethics review of CRTs, examine investigator experiences with the ethics review process, and assess the need for ethics guidelines for CRTs. An electronic search strategy implemented in MEDLINE was used to identify and randomly sample 300 CRTs published in English language journals from 2000 to 2008. A web-based survey with closed- and open-ended questions was administered to corresponding authors in a series of six contacts. The survey response rate was 64%. Among 182 of 285 eligible respondents, 91% indicated that they had sought research ethics approval for the identified CRT, although only 70% respondents reported research ethics approval in the published article. Nearly one-third (31%) indicated that they have had to meet with ethics committees to explain aspects of their trials, nearly half (46%) experienced variability in the ethics review process in multijurisdictional trials, and 38% experienced negative impacts of the ethics review process on their trials, including delays in trial initiation (28%), increased costs (10%), compromised ability to recruit participants (16%), and compromised methodological quality (9%). Most respondents (74%; 95% confidence interval (CI): 67%-80%) agreed or strongly agreed that there is a need to develop ethics guidelines for CRTs, and (70%; 95% CI: 63%-77%) that ethics committees could be better informed about distinct ethical issues surrounding CRTs. Thirty-six percent of authors did not respond to the survey. Due to the absence of comparable results from a representative sample of authors of individually randomized trials, it is unclear to what extent the reported challenges result from the CRT design. CRT investigators are experiencing challenges in the research ethics review of their trials, including excessive delays, variability in process and outcome, and imposed requirements that can have negative consequences for study conduct. Investigators identified a clear need for ethics guidelines for CRTs and education of research ethics committees about distinct ethical issues in CRTs.

Study of Ethical Values and Practices in Academic Programmes at a Higher Learning Institution

NASA Astrophysics Data System (ADS)

Narayanasamy, Kogilah; Shetty, M. V.

The study on ethical values in academic programmes has attracted the attention of many researchers throughout the world especially in view of its important role today. Many academic programmes today focus on how to make profit both for the individual and the organization and on how to increase the firm`s market share and shareholders value and in the process may compromise on their ethical values and have unethical practices. Thus, this study is undertaken to evaluate the extent of integration of ethical values in the academic programmes of the higher learning operating institution involved with post graduate and higher level programs. The impact of demographics and race of the lecturer and students have been separately ascertained. The sample has been taken from one college, rated to be high in ethical values and practices, a sample of 120 students and 31 lecturers from a leading college (reputed for ethical values) have been collated and analyzed for validation of the objectives. The explanation on ethics has been done to a large extent in the study. The study also indicates the number of higher learning institutions to indicate the extent of impact if these issues are appropriately addressed. Government policy in this regard also needs to be reviewed and improved to avoid deterioration of ethical values and practices in the dynamic market place of today. This study review that, the level at which lecturers at the institutions have high ethical values and do incorporate it in their lectures and discussions in the classroom. The impact of demographic factors on the ethical values and practice of the lecturers have useful insights for academic staff recruitment and staff training. On the other hand, students` ethical values and behavior is a cause for concern to everyone as these future pillars of the nation have been found to have their ethical values and practices at low levels. The implications for the college management as to consider further emphasis on the teaching of ethics as a single subject, while incorporating a discussion of the ethical issues (like) related to the various subjects taught in the college. The college should also ensure that they support and nurture in cultivating of ethical values and practices in all aspects of their activities and operations. Eventually, this will ensure to provide advantageous environment for not only creating knowledgeable individuals but also ethical citizens and leaders.

Ethical and practical challenges in implementing informed consent in HIV/AIDS clinical trials in developing or resource-limited countries.

PubMed

Mystakidou, Kyriaki; Panagiotou, Irene; Katsaragakis, Stelios; Tsilika, Eleni; Parpa, Efi

2009-09-01

Ethical issues regarding HIV/AIDS human research in the developing world remain under continuous evaluation; a critical area of concern includes informed consent. This paper reviews several of the most important ethical and practical aspects of informed consent in HIV research in developing countries. Enhancement of overall understanding of such key issues might promote higher ethical standards of future research. The major objective was to address informed consent in human research in non-Western societies, and specifically in HIV clinical trials of affected adults. Secondary end-points included the consent complexities in HIV research involving vulnerable patient populations in resource-limited nations, such as children, adolescents and women. A systematic review of the published literature using MEDLINE and EMBASE from 1998 until December 2008 was performed, using the search terms 'HIV/AIDS', 'informed consent', 'clinical trials', 'developing world'. Ethical complexities such as participants' diminished autonomy, coercion or monetary inducement, language difficulties, illiteracy or lack of true understanding of the entire study, cultural barriers mainly due to communitarianism and social diversities were identified in the 44 studies reviewed. Informed consent of vulnerable patient populations must be tailored to their sex and developmental age, while counselling is fundamental. Children and adolescents' assent must be ensured. Local language is to be used, while trusted community leaders and local cultural representatives may convey information. Despite the heterogeneity of studies, similarities were identified. Providing adequate and comprehensive information and assessing the true understanding of the research represent fundamental prerequisites. Potential solutions to the critical areas of concern include peer counselling and meetings with local community leaders or local cultural representatives. International investigators of HIV human research should bear in mind these ethical issues and their potential solutions, when trying to ensure ethical research conduct, based on a truly informed and culturally relevant consent.

Improving our application of the health education code of ethics.

PubMed

Marks, Ray; Shive, Steven E

2006-01-01

The Health Education Code of Ethics was designed to provide a framework of shared values within which health education might be practiced. However, an informal survey conducted on a limited sample in November 2004 indicated that ethics and how to apply the code are topics not readily taught formally within all health education programs. There is, however, an expressed interest among health educators in understanding the code and its application. Because of the immense import of ethics, affecting responsible professional conduct at all levels, this article is designed to introduce the topic to health education practitioners who have had little formal exposure to ethics curricula, as well as to faculty who would like to teach this subject. The authors specifically review several resources that might be especially helpful in fostering a better understanding of this essential but often underestimated aspect of health education practice and research, namely, its ethical application.

Partnering with patients in translational oncology research: ethical approach.

PubMed

Mamzer, Marie-France; Duchange, Nathalie; Darquy, Sylviane; Marvanne, Patrice; Rambaud, Claude; Marsico, Giovanna; Cerisey, Catherine; Scotté, Florian; Burgun, Anita; Badoual, Cécile; Laurent-Puig, Pierre; Hervé, Christian

2017-04-08

The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or "precision" medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives' involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient's expectations. Two distinct committees were settled in CARPEM: an "Expert Committee", gathering healthcare and research professionals, and a "Patient Committee", gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders. The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications. Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses the concept of translational ethics as a way to handle the main remaining gap between combining care and research activities in the medical pathway and the existing framework.

An ethics safe harbor for international genomics research?

PubMed Central

2013-01-01

Background Genomics research is becoming increasingly globally connected and collaborative, contesting traditional ethical and legal boundaries between global and local research practice. As well, global data-driven genomics research holds great promise for health discoveries. Yet, paradoxically, current research ethics review systems around the world challenge potential improvements in human health from such research and thus undermine respect for research participants. Case reports illustrate that the current system is costly, fragmented, inefficient, inadequate, and inconsistent. There is an urgent need to improve the governance system of ethics review to enable secure and seamless genomic and clinical data sharing across jurisdictions. Discussion Building on the international privacy 'safe harbor’ model that was developed following the adoption of the European Privacy Directive, we propose an international infrastructure. The goal is to create a streamlined and harmonized ethics governance system for international, data-driven genomics research projects. The proposed 'Safe Harbor Framework for International Ethics Equivalency’ would consist in part of an agency supporting an International Federation for Ethics Review (IFER), formed by a voluntary agreement among countries, granting agencies, philanthropies, institutions, and healthcare, patient advocacy, and research organizations. IFER would be both a central ethics review body and also a forum for review and follow-up of policies concerning ethics norms for international genomics research projects. It would be built on five principle elements: (1) registration; (2) compliance review; (3) recognition; (4) monitoring and enforcement; and (5) public participation. Summary A Safe Harbor Framework for International Ethics Equivalency would create many benefits for researchers, countries, and the general public, and may eventually have application beyond genomics to other areas of biomedical research that increasingly engage in secondary use of data and present only negligible risks. Among the benefits, research participants and patients would have uniform adequate protection, while researchers would be ensured expert ethics review with a reduction in cost, time, administrative hassle, and redundant regulatory hurdles. Most importantly, society would enjoy the maximization of the potential benefits of genomics research. PMID:24267880

Developing an informational tool for ethical engagement in medical tourism.

PubMed

Adams, Krystyna; Snyder, Jeremy; Crooks, Valorie A; Johnston, Rory

2017-08-25

Medical tourism, the practice of persons intentionally travelling across international boundaries to access medical care, has drawn increasing attention from researchers, particularly in relation to potential ethical concerns of this practice. Researchers have expressed concern for potential negative impacts to individual safety, public health within both countries of origin for medical tourists and destination countries, and global health equity. However, these ethical concerns are not discussed within the sources of information commonly provided to medical tourists, and as such, medical tourists may not be aware of these concerns when engaging in medical tourism. This paper describes the methodology utilized to develop an information sheet intended to be disseminated to Canadian medical tourists to encourage contemplation and further public discussion of the ethical concerns in medical tourism. The methodology for developing the information sheet drew on an iterative process to consider stakeholder feedback on the content and use of the information sheet as it might inform prospective medical tourists' decision making. This methodology includes a literature review as well as formative research with Canadian public health professionals and former medical tourists. The final information sheet underwent numerous revisions throughout the formative research process according to feedback from medical tourism stakeholders. These revisions focused primarily on making the information sheet concise with points that encourage individuals considering travelling for medical tourism to do further research regarding their safety both within the destination country, while travelling, and once returning to Canada, and the potential impacts of their trip on third parties. This methodology may be replicated for the development of information sheets intending to communicate ethical concerns of other practices to providers or consumers of a certain service.

Can UK NHS research ethics committees effectively monitor publication and outcome reporting bias?

PubMed

Begum, Rasheda; Kolstoe, Simon

2015-07-25

Publication and outcome reporting bias is often caused by researchers selectively choosing which scientific results and outcomes to publish. This behaviour is ethically significant as it distorts the literature used for future scientific or clinical decision-making. This study investigates the practicalities of using ethics applications submitted to a UK National Health Service (NHS) research ethics committee to monitor both types of reporting bias. As part of an internal audit we accessed research ethics database records for studies submitting an end of study declaration to the Hampshire A research ethics committee (formerly Southampton A) between 1st January 2010 and 31st December 2011. A literature search was used to establish the publication status of studies. Primary and secondary outcomes stated in application forms were compared with outcomes reported in publications. Out of 116 studies the literature search identified 57 publications for 37 studies giving a publication rate of 32%. Original Research Ethics Committee (REC) applications could be obtained for 28 of the published studies. Outcome inconsistencies were found in 16 (57%) of the published studies. This study showed that the problem of publication and outcome reporting bias is still significant in the UK. The method described here demonstrates that UK NHS research ethics committees are in a good position to detect such bias due to their unique access to original research protocols. Data gathered in this way could be used by the Health Research Authority to encourage higher levels of transparency in UK research.

Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics☆

PubMed Central

Kingori, Patricia

2013-01-01

Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical attention given to ‘the what’ and ‘the why’ in bioethics – what action is taken place and why – these should be considered along ‘the who’ – who are the individuals tasked with bioethics and what can their insights bring to macro-level and abstract discussions of bioethics. This paper will draw on the philosophical theories of Paul Ricoeur which compliments a sociological examination of data collectors experiences and use of their agency coupled with a concern for contextual and institutional factors in which they worked. In emphasising everyday experiences and contexts, I will argue that data collectors' practice of bioethics was shaped by their position at the frontline of face-to-face interactions with medical research participants and community members, alongside their own personal ethical values and motivations. Institutional interpretations of bioethics also imposed certain parameters on their bioethical practice but these were generally peripheral to their sense of obligation and the expectations conferred in witnessing the needs and suffering of those they encountered during their quotidian research duties. This paper will demonstrate that although the principle of autonomy has dominated discussions of bioethics and gaining informed consent seen as a central facet of ethical research by many research institutions, for data collectors this principle was seldom the most important marker of their ethical practice. Instead, data collectors were concerned with remedying the dilemmas they encountered through enacting their own interpretations of justice and beneficence and imposing their own agency on the circumstances they experienced. Their practice of bioethics demonstrates their contribution to the conduct of research and the shortcomings of an over-emphasis on autonomy. PMID:24210881

Contribution of ethics education to the ethical competence of nursing students: educators' and students' perceptions.

PubMed

Cannaerts, Nancy; Gastmans, Chris; Dierckx de Casterlé, Bernadette

2014-12-01

To review the literature on perceptions of nursing students and/or educators on the contribution of ethics education to ethical competence in nursing students. Nurses do not always demonstrate the competencies necessary to engage in ethical practice. Educators continue to debate about the best ways to teach ethics to nurses so that they can develop ethical competencies. MEDLINE, Embase, CINAHL, PsycINFO, and Web of Science. A total of 15 articles with a quantitative, qualitative, or mixed-methods design published between January 1992 and March 2012 were analyzed. According to students and educators, ethics education increases ethical perception of nursing students and the development of reflective and analytical skills. However, its contribution to the development of ethical behavior was barely mentioned. The accounts of students and educators revealed essential features of effective ethics education: active involvement of students in case study discussions and use of ethical frameworks. The use of activating educational strategies requires a safe learning environment where students can openly reflect on values at stake in their care practice. A better understanding of how students learn to develop ethical skills and of influencing factors can guide educators to develop ethics courses for nursing curriculum. Future research needs to focus on the methodological accuracy of sampling and measuring instruments. © The Author(s) 2014.

The protection of laboratory animals: a response to Stephenson.

PubMed

Parker, J

1994-08-01

This paper clarifies certain issues raised by Wendell Stephenson (The Journal of Medicine and Philosophy 18: 375-388, 1993) about research programs and animal care practices at the Oregon Regional Primate Research Center. It also responds to Stephenson's critique of the National Institute of Health's Guide for the Care and Use of Laboratory Animals. It identifies utilitarianism as the ethical theory underlying Stephenson's critique. Arguing that such an ethical theory is unworkable in addressing concerns about biomedical research and the use of animals, the paper defends the Guide's reliance on a wider tradition of ethical theories.

Communicating their individual results to participants in an environmental exposure study: Insights from clinical ethics

DOE Office of Scientific and Technical Information (OSTI.GOV)

Deck, W.; Kosatsky, T.

1999-02-01

A study measuring the uptake of chemical contaminants among sport fishers who consume fish caught in the St. Lawrence river is currently being conducted in Montreal, Canada. In this study, blood, hair, and urine collected from local sport fishers is being tested for heavy metals and persistent organochlorine chemicals. The objective of this study was to formulate a framework for determining what information to communicate to individual subjects of a study measuring biomarkers of exposure, consistent with the principles of ethical clinical and research practice. Methods consisted of review of the scope of environmental exposure studies, including the use ofmore » biomarker measurement in clinical medicine and environmental research and the relevant principles of clinical ethics and research practice. An exposure biomarker study is designed to elucidate constitutional, behavioral, and environmental determinants of tissue concentrations of exogenous substances. Ethical clinical and research practice, aiming to maximize autonomy and beneficence and to minimize harm, requires that study findings concerning the determinants of exposure be communicated to study participants. In addition, investigators should reference clinical action levels beyond which individual biomarker results are routinely communicated to participants. When biomarkers have no known relation to risk, or when levels fall below action levels, it may be preferable not co communicate individual results, if this arrangement has been formalized at the time of informed consent.« less

Creating a Controlled Vocabulary for the Ethics of Human Research: Towards a Biomedical Ethics Ontology

PubMed Central

Koepsell, David; Arp, Robert; Fostel, Jennifer; Smith, Barry

2009-01-01

Ontologies describe reality in specific domains in ways that can bridge various disciplines and languages. They allow easier access and integration of information that is collected by different groups. Ontologies are currently used in the biomedical sciences, geography, and law. A Biomedical Ethics Ontology (BMEO) would benefit members of ethics committees who deal with protocols and consent forms spanning numerous fields of inquiry. There already exists the Ontology for Biomedical Investigations (OBI); the proposed BMEO would interoperate with OBI, creating a powerful information tool. We define a domain ontology and begin to construct a BMEO, focused on the process of evaluating human research protocols. Finally, we show how our BMEO can have practical applications for ethics committees. This paper describes ongoing research and a strategy for its broader continuation and cooperation. PMID:19374479

Ethical evaluation of research proposals by ethics panels advising the European Commission.

PubMed

Kolar, Roman

2004-06-01

Ethical principles with regard to animal experimentation are referred to in European Union (EU) legislation and other official documents. Therefore, applications for funding of research under the EU's research programme may undergo an ethical review that is carried out by so-called ethics panels, consisting of experts chosen by the European Commission. The work of these panels differs substantially from that of other ethical committees, as they exist on the institutional, local, regional or national level. Their main purpose is not to decide whether a proposed research can be regarded legal, and therefore should be endorsed or licensed; instead, it is to help the Commission in prioritising its funding. The panels may examine other ethical aspects than those of animal experimentation or animal welfare alone, such as the use of human volunteers. This is reflected by the composition of the panels. Their decisions are normally based on consensus. Even though these decisions may refer to EU legislation, the criteria applied are not restricted to those provided by this legislation. Nevertheless, the various aspects of the Commission's ethical evaluation system (e.g. formal and practical basic conditions, information content of applications, type of decisions taken, lacking of any quality control) offers opportunities for improvement.

Reengineering Biomedical Translational Research with Engineering Ethics.

PubMed

Sunderland, Mary E; Nayak, Rahul Uday

2015-08-01

It is widely accepted that translational research practitioners need to acquire special skills and knowledge that will enable them to anticipate, analyze, and manage a range of ethical issues. While there is a small but growing literature that addresses the ethics of translational research, there is a dearth of scholarship regarding how this might apply to engineers. In this paper we examine engineers as key translators and argue that they are well positioned to ask transformative ethical questions. Asking engineers to both broaden and deepen their consideration of ethics in their work, however, requires a shift in the way ethics is often portrayed and perceived in science and engineering communities. Rather than interpreting ethics as a roadblock to the success of translational research, we suggest that engineers should be encouraged to ask questions about the socio-ethical dimensions of their work. This requires expanding the conceptual framework of engineering beyond its traditional focus on "how" and "what" questions to also include "why" and "who" questions to facilitate the gathering of normative, socially-situated information. Empowering engineers to ask "why" and "who" questions should spur the development of technologies and practices that contribute to improving health outcomes.

Knowledge, awareness and practice of ethics among doctors in tertiary care hospital.

PubMed

Singh, Surjit; Sharma, Pramod Kumar; Bhandari, Bharti; Kaur, Rimplejeet

2016-10-01

With the advancement of healthcare and medical research, doctors need to be aware of the basic ethical principles. This cross-sectional study is an attempt to assess the knowledge, awareness, and practice of health-care ethics among health-care professionals. After taking written informed consent, a standard questionnaire was administered to 117 doctors. No personal information was recorded on the questionnaire so as to ensure the confidentiality and anonymity of participants. Data analysis was done using SPSS version 21 (IBM Corp., Armonk, NY, USA). Statistically significant difference observed between the opinions of consultant and senior resident (SRs) on issues like, adherence to confidentiality; paternalistic attitude of doctors (doctors should do their best for the patient irrespective of patient's opinion); doctor's decision should be final in case of disagreement and interest in learning ethics ( P < 0.05). However, no difference reported among them with respect to patient wishes, informing patient regarding wrongdoing, informing close relatives, seeking consent for children and patients' consent for procedures. Furthermore, no significant difference observed between the two with respect to the practice of health-care ethics. Surprisingly, the response of clinical and nonclinical faculty did not differ as far as awareness and practice of ethics were concerned. The significant difference is observed in the knowledge, awareness, and practice of ethics among consultants and SRs. Conferences, symposium, and workshops, on health-care ethics, may act as a means of sensitizing doctors and thus will help to bridge this gap and protect the well-being and confidentiality of the patients. Such an effort may bring about harmonious change in the doctor-patient relationship.

A comparison of ethical issues in nursing practice across nursing units.

PubMed

Park, Mihyun; Jeon, Sang Hee; Hong, Hyun-Ja; Cho, Sung-Hyun

2014-08-01

The complexity and variety of ethical issues in nursing is always increasing, and those issues lead to special concerns for nurses because they have critical impacts on nursing practice. The purpose of this study was to gather comprehensive information about ethical issues in nursing practice, comparing the issues in different types of nursing units including general units, oncology units, intensive care units, operating rooms, and outpatient departments. The study used a descriptive research design. Ethics/human rights issues encountered by nurses in their daily nursing practice were identified by using the Ethical Issues Scale. The study sample included 993 staff nurses working in a university hospital in South Korea. This study was approved by the University Institutional Review Board. Completed questionnaires were returned sealed with signed informed consent. The most frequently and disturbingly encountered issues across nursing units were "conflicts in the nurse-physician relationship," "providing care with a possible risk to your health," and "staffing patterns that limit patient access to nursing care." The findings of this study showed that nurses from different nursing units experienced differences in the types or frequency of ethical issues. In particular, intensive care units had the greatest means of all the units in all three component scales including end-of-life treatment issues, patient care issues, and human rights issues. Nurses experienced various ethical challenges in their daily practice. Of the ethical issues, some were distinctively and frequently experienced by nurses in a specific unit. This study suggested that identifying and understanding specific ethical issues faced by nurses in their own areas may be an effective educational approach to motivate nurses and to facilitate nurses' reflection on their experiences. © The Author(s) 2014.

A Qualitative Multi-Case Study of the Influence of Personal and Professional Ethics on the Leadership of Public School Superintendents

ERIC Educational Resources Information Center

McDermott, Brian J.

2010-01-01

The purpose of this study is to examine the influence of personal and professional ethics on the leadership of public school superintendents. A multi-case, qualitative research design was used to gather data from four practicing public school superintendents. Transformational leadership theory and the three pillars of ethics of leadership…

Research across the disciplines: a road map for quality criteria in empirical ethics research.

PubMed

Mertz, Marcel; Inthorn, Julia; Renz, Günter; Rothenberger, Lillian Geza; Salloch, Sabine; Schildmann, Jan; Wöhlke, Sabine; Schicktanz, Silke

2014-03-01

Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria--a "road map"--tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined.

Research across the disciplines: a road map for quality criteria in empirical ethics research

PubMed Central

2014-01-01

Background Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. Discussion While empirical and normative-ethical research projects have quality criteria in their own right, we focus on the specific quality criteria for EE research. We develop a tentative list of quality criteria – a “road map” – tailored to interdisciplinary research in EE, to guide assessments of research quality. These quality criteria fall into the categories of primary research question, theoretical framework and methods, relevance, interdisciplinary research practice and research ethics and scientific ethos. Summary EE research is an important and innovative development in bioethics. However, a lack of standards has led to concerns about and even rejection of EE by various scholars. Our suggested orientation list of criteria, presented in the form of reflective questions, cannot be considered definitive, but serves as a tool to provoke systematic reflection during the planning and composition of an EE research study. These criteria need to be tested in different EE research settings and further refined. PMID:24580847

Informed consent in psychiatry clinical research: A conceptual review of issues, challenges, and recommendations

PubMed Central

Gupta, Umesh Chandra; Kharawala, Saifuddin

2012-01-01

Obtaining informed consent in psychiatry clinical research involving subjects with diminished mental abilities and impaired consent capacity has been a challenge for researchers, posing many ethical concerns and procedural hurdles due to participants’ cognitive deficits and impaired ability to judge reality. Regulations seem inadequate and provide limited guidance, not sufficient to address all the ethical issues inherent in different situations related to obtaining consent from decisionally impaired persons. Researchers are struggling to find a balance between risk-benefit ratio, research advancement, and autonomy of study subjects. Inspired to improve the consent process in psychiatry clinical research, many studies have been conducted focusing on various informed consent-related ethical concerns, with the aim of developing appropriate strategies and optimizing the informed consent procedure in psychiatry clinical research, overcoming the ethical concerns. This article critically reviews the various ethical issues and consent challenges, their underlying reasons, and investigates the appropriate strategies and practices needed to be adopted while obtaining informed consent from subjects with impaired consent capacity, participating in psychiatry clinical research. PMID:22347696

The field of forensic psychology in Israel--the state of the discipline.

PubMed

Zaki, Moshe

2009-12-01

The process of the establishment of forensic psychology in Israel begins in the eighties; while at the past 6 years after the creation of the Department of Psychology, Law and Ethics--The International Center for Health, Law and Ethics at Haifa University, the field continues to grow rapidly. Today, the development of forensic psychology is reflected in the scientific practice at Haifa University as at others (academic courses for different graduate levels and research concerning professional and ethical issues); as well as in the practical professional development of professional organizations, practice standards and training programs. Now as a specialty, forensic psychology must continue to make an effort to enrich in science and in professional practice, its aid in the administration of justice by assisting legal decision-makers.

Managing Ethical Challenges to Mental Health Research in Post‐Conflict Settings

PubMed Central

Khan, Muhammad Naseem; Rahman, Atif; Frith, Lucy

2015-01-01

Abstract Recently the World Health Organization (WHO) has highlighted the need to strengthen mental health systems following emergencies, including natural and manmade disasters. Mental health services need to be informed by culturally attuned evidence that is developed through research. Therefore, there is an urgent need to establish rigorous ethical research practice to underpin the evidence‐base for mental health services delivered during and following emergencies. PMID:25580875

Ethics by opinion poll? The functions of attitudes research for normative deliberations in medical ethics.

PubMed

Salloch, Sabine; Vollmann, Jochen; Schildmann, Jan

2014-09-01

Empirical studies on people's moral attitudes regarding ethically challenging topics contribute greatly to research in medical ethics. However, it is not always clear in which ways this research adds to medical ethics as a normative discipline. In this article, we aim to provide a systematic account of the different ways in which attitudinal research can be used for normative reflection. In the first part, we discuss whether ethical judgements can be based on empirical work alone and we develop a sceptical position regarding this point, taking into account theoretical, methodological and pragmatic considerations. As empirical data should not be taken as a direct source for normative justification, we then delineate different ways in which attitudes research can be combined with theoretical accounts of normative justification in the second part of the article. Firstly, the combination of attitudes research with normative-ethical theories is analysed with respect to three different aspects: (a) The extent of empirical data which is needed, (b) the question of which kind of data is required and (c) the ways in which the empirical data are processed within the framework of an ethical theory. Secondly, two further functions of attitudes research are displayed which lie outside the traditional focus of ethical theories: the exploratory function of detecting and characterising new ethical problems, and the field of 'moral pragmatics'. The article concludes with a methodological outlook and suggestions for the concrete practice of attitudinal research in medical ethics. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Photography and Social Media Use in Community-Based Participatory Research with Youth: Ethical Considerations.

PubMed

Kia-Keating, Maryam; Santacrose, Diana; Liu, Sabrina

2017-12-01

Community-based participatory researchers increasingly incorporate photography and social media into their work. Despite its relative infancy, social media has created a powerful network that allows individuals to convey messages quickly to a widespread audience. In addition to its potential benefits, the use of social media in research also carries risk, given the fast pace of exchanges, sharing of personal images and ideas in high accessibility, low privacy contexts and continually shifting options and upgrades. This article contributes to the literature examining ethical considerations for photography and social media use in community-based participatory research. We describe three key ethical dilemmas that we encountered during our participatory photography project with Latina/o youth: (a) use and content of images and risk; (b) incentives and coercion; and (c) social media activity and confidentiality. We provide our responses to these challenges, contextualized in theory and practice, and share lessons learned. We raise the question of how to contend with cultural shifts in boundaries and privacy. We propose that evaluating participant vulnerability versus potential empowerment may be more fitting than the standard approach of assessing risks and benefits. Finally, we recommend upholding the principles of participatory research by co-producing ethical practices with one's participants. © Society for Community Research and Action 2017.

Ethical and regulatory issues of pragmatic cluster randomized trials in contemporary health systems

PubMed Central

Anderson, Monique L; Califf, Robert M; Sugarman, Jeremy

2015-01-01

Cluster randomized trials (CRTs) randomly assign groups of individuals to examine research questions or test interventions and measure their effects on individuals. Recent emphasis on quality improvement, comparative effectiveness, and learning health systems has prompted expanded use of pragmatic CRTs in routine healthcare settings, which in turn poses practical and ethical challenges that current oversight frameworks may not adequately address. The 2012 Ottawa Statement provides a basis for considering many issues related to pragmatic CRTs but challenges remain, including some arising from the current U.S. research and healthcare regulations. In order to examine the ethical, regulatory, and practical questions facing pragmatic CRTs in healthcare settings, the National Institutes of Health (NIH) Health Care Systems Research Collaboratory convened a workshop in Bethesda, Maryland in July of 2013. Attendees included experts in clinical trials, patient advocacy, research ethics, and research regulations from academia, industry, the NIH, and other federal agencies. Workshop participants identified substantial barriers to implementing these types of CRTs, including issues related to research design, gatekeepers and governance in health systems, consent, institutional review boards, data monitoring, privacy, and special populations. We describe these barriers and suggest means for understanding and overcoming them to facilitate pragmatic CRTs in healthcare settings. PMID:25733677

Team-Based Learning Instruction for Responsible Conduct of Research Positively Impacts Ethical Decision-Making

PubMed Central

McCormack, Wayne T.; Garvan, Cynthia W.

2013-01-01

Common practices for responsible conduct of research (RCR) instruction have recently been shown to have no positive impact on and possibly to undermine ethical decision-making (EDM). We show that a team-based learning (TBL) RCR curriculum results in some gains in decision ethicality, the use of more helpful meta-cognitive reasoning strategies in decision-making, and elimination of most negative effects of other forms of RCR instruction on social–behavioral responses. TBL supports the reasoning strategies and social mechanisms that underlie EDM and ethics instruction, and may provide a more effective method for RCR instruction than lectures and small group discussion. PMID:24073606

[Legal repercussions of Clinical Ethics Committees reports].

PubMed

Couceiro V, Azucena; Beca I, Juan Pablo

2006-04-01

Clinical Ethics Committees and Research Ethics Committees have their own specific roles. The Clinical Ethics Committee's pronouncements have an advisory function, whereas Research Ethics Committees' decisions are binding. This article analyzes the legal impact of the Clinical Ethics Committees' reports. Legal and medical reasoning share the same practical nature. Both can have several correct answers to the same situation. Clinical Ethics Committees deliberate about these alternatives and analyze the involved values. Their conclusions are non-compulsory recommendations. They do not replace nor diminish the doctor's personal responsibility. Even though the Clinical Ethics Committees' reports are not binding, they constitute a sort of "expert's opinion", expressed by qualified professionals, who assume their own professional responsibility as advisors. The members' behavior is necessarily subject to constitutional and legal regulations. When judges review the Clinical Ethics Committee's reports, they must realize that their nature is advisory, and also consider them an essential element to reduce the gap between the medical and legal fields. In this way, the problem of increasingly transforming medicine into a legal issue can be prevented.

Comparative Study On The Ethical Perceptions Of Contractors And Designers In The China Construction Industry

NASA Astrophysics Data System (ADS)

Kang, Byung Gyoo; Long, Kaiwen; Zhang, Cheng; Li Hao, Jian

2017-12-01

Ethics is becoming one of the most important requirements for successful business in the 21st century. The construction industry cannot be exceptional from this trend. However construction ethics management requires different approaches from other industries, as the products of the industry are construction projects which are completely different from mass production. Contractors and designers are two major participants in construction projects. The roles and responsibilities of these two project stakeholders decisively influence all aspects of construction project. Practically ethical perceptions of contractors and designers are one of main aspects to be considered for the effective and efficient management of ethics for the construction industry. This research has investigated the ethical perceptions of contractors and designers in the China construction industry. A questionnaire survey which contains 15 ethical issues and 6 demographic factors has been conducted. 170 construction professionals from construction companies and consulting companies have been participated in this survey. These 15 ethical issues are ranked in terms of seriousness, frequency and importance for both contractors and designers as a single group to understand the overall perceptions in the industry. The analysis has also been conducted for contractors and designers respectively to make comparisons between them. The top three serious ethical issues in the industry are ‘Bribery and corruption’, ‘Failure to practice whistle-blowing’ and ‘Improper bidding practices’. Contractors and designers showed similar outcomes for the top five important ethical issues. But for the middle ranged ethical issues, they showed some differences. Further researches are required to identify the causes of the similarity and differences.

Transforming Practice with Older People through an Ethic of Care

PubMed Central

Ward, Lizzie; Barnes, Marian

2016-01-01

This article explores the relevance of deliberative practices framed by feminist care ethics to social work practice with older people. It draws on two connected projects which brought together older people: practitioners and academics. The first was a participatory research project in which the significance of care to well-being in old age emerged. The second was a knowledge exchange project which generated learning resources for social care practice based on the research findings of the first project. Here we analyse selected transcripts of recordings from meetings of both projects to consider the ways that discussions about lived experiences and everyday lives demonstrate care through this dialogue. Using this analysis, we propose that care ethics can be useful in transforming relationships between older people and those working with them through the creation of hybrid spaces in which ‘care-full deliberation’ can happen. We argue that such reflective spaces can enable transformative dialogue about care and its importance to older people and offer a counterbalance to the procedurally driven environments in which much social work practice takes place and can support practice more attuned to the circumstances and concerns of older people. PMID:27559205

Transforming Practice with Older People through an Ethic of Care.

PubMed

Ward, Lizzie; Barnes, Marian

2016-06-01

This article explores the relevance of deliberative practices framed by feminist care ethics to social work practice with older people. It draws on two connected projects which brought together older people: practitioners and academics. The first was a participatory research project in which the significance of care to well-being in old age emerged. The second was a knowledge exchange project which generated learning resources for social care practice based on the research findings of the first project. Here we analyse selected transcripts of recordings from meetings of both projects to consider the ways that discussions about lived experiences and everyday lives demonstrate care through this dialogue. Using this analysis, we propose that care ethics can be useful in transforming relationships between older people and those working with them through the creation of hybrid spaces in which 'care-full deliberation' can happen. We argue that such reflective spaces can enable transformative dialogue about care and its importance to older people and offer a counterbalance to the procedurally driven environments in which much social work practice takes place and can support practice more attuned to the circumstances and concerns of older people.

When ethics constrains clinical research: trial design of control arms in "greater than minimal risk" pediatric trials.

PubMed

de Melo-Martín, Inmaculada; Sondhi, Dolan; Crystal, Ronald G

2011-09-01

For more than three decades clinical research in the United States has been explicitly guided by the idea that ethical considerations must be central to research design and practice. In spite of the centrality of this idea, attempting to balance the sometimes conflicting values of advancing scientific knowledge and protecting human subjects continues to pose challenges. Possible conflicts between the standards of scientific research and those of ethics are particularly salient in relation to trial design. Specifically, the choice of a control arm is an aspect of trial design in which ethical and scientific issues are deeply entwined. Although ethical quandaries related to the choice of control arms may arise when conducting any type of clinical trials, they are conspicuous in early phase gene transfer trials that involve highly novel approaches and surgical procedures and have children as the research subjects. Because of children's and their parents' vulnerabilities, in trials that investigate therapies for fatal, rare diseases affecting minors, the scientific and ethical concerns related to choosing appropriate controls are particularly significant. In this paper we use direct gene transfer to the central nervous system to treat late infantile neuronal ceroid lipofuscinosis to illustrate some of these ethical issues and explore possible solutions to real and apparent conflicts between scientific and ethical considerations.

Towards a strong virtue ethics for nursing practice.

PubMed

Armstrong, Alan E

2006-07-01

Illness creates a range of negative emotions in patients including anxiety, fear, powerlessness, and vulnerability. There is much debate on the 'therapeutic' or 'helping' nurse-patient relationship. However, despite the current agenda regarding patient-centred care, the literature concerning the development of good interpersonal responses and the view that a satisfactory nursing ethics should focus on persons and character traits rather than actions, nursing ethics is dominated by the traditional obligation, act-centred theories such as consequentialism and deontology. I critically examine these theories and the role of duty-based notions in both general ethics and nursing practice. Because of well-established flaws, I conclude that obligation-based moral theories are incomplete and inadequate for nursing practice. I examine the work of Hursthouse on virtue ethics' action guidance and the v-rules. I argue that the moral virtues and a strong (action-guiding) version of virtue ethics provide a plausible and viable alternative for nursing practice. I develop an account of a virtue-based helping relationship and a virtue-based approach to nursing. The latter is characterized by three features: (1) exercising the moral virtues such as compassion; (2) using judgement; and (3) using moral wisdom, understood to include at least moral perception, moral sensitivity, and moral imagination. Merits and problems of the virtue-based approach are examined. I relate the work of MacIntyre to nursing and I conceive nursing as a practice: nurses who exercise the virtues and seek the internal goods help to sustain the practice of nursing and thus prevent the marginalization of the virtues. The strong practice-based version of virtue ethics proposed is context-dependent, particularist, and relational. Several areas for future philosophical inquiry and empirical nursing research are suggested to develop this account yet further.

Navigating Ethics in the Digital Age: Introducing Connected and Open Research Ethics (CORE), a Tool for Researchers and Institutional Review Boards.

PubMed

Torous, John; Nebeker, Camille

2017-02-08

Research studies that leverage emerging technologies, such as passive sensing devices and mobile apps, have demonstrated encouraging potential with respect to favorably influencing the human condition. As a result, the nascent fields of mHealth and digital medicine have gained traction over the past decade as demonstrated in the United States by increased federal funding for research that cuts across a broad spectrum of health conditions. The existence of mHealth and digital medicine also introduced new ethical and regulatory challenges that both institutional review boards (IRBs) and researchers are struggling to navigate. In response, the Connected and Open Research Ethics (CORE) initiative was launched. The CORE initiative has employed a participatory research approach, whereby researchers and IRB affiliates are involved in identifying the priorities and functionality of a shared resource. The overarching goal of CORE is to develop dynamic and relevant ethical practices to guide mHealth and digital medicine research. In this Viewpoint paper, we describe the CORE initiative and call for readers to join the CORE Network and contribute to the bigger conversation on ethics in the digital age. ©John Torous, Camille Nebeker. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.02.2017.

Perception of ethical misconduct by neuropsychology professionals in Spain.

PubMed

Olabarrieta-Landa, Laiene; Romero, Alfonso Caracuel; Panyavin, Ivan; Arango-Lasprilla, Juan Carlos

2017-01-01

To examine the prevalence of perceived ethical misconduct in clinical practice, teaching, and research in the field of neuropsychology in Spain. Two hundred and fifteen self-identified mental health professionals who engage in neuropsychology practice in Spain completed an online survey from July to December of 2013. In the ethics section of the survey, participants were asked to identify if neuropsychologists they know who work in their country engaged in specific kinds of ethical misconduct. 41% reported receiving formal training in professional ethics. The clinical findings are as follows. The highest rate of perceived misconduct was found in the area of professional training and expertise, with an average of 40.7%, followed by research/publications (25.6%), clinical care (23.9%), and professional relationships (8.8%). Specifically, regarding training, over half of respondents (56.7%) know professionals who claim themselves to be neuropsychologists, even though they lack proper training or expertise and 46.0% know professionals in the field who do not have adequate training for experience to be working in the field. Regarding research/publications, 41.9% of respondents know professionals who appear as authors on publications where they have not made a significant contribution. Regarding clinical care, over one third of respondents endorse knowing professionals who (1) provide results of neuropsychological evaluations in such a way that patients or other professionals are not likely to understand (37.2%) and (2) do not have the skills or training to work with patients who are culturally different from them (34.9%). Less than half of survey respondents reported receiving ethics training. It is possible that introducing more or improved ethics courses into pre-graduate and/or graduate school curriculums, and/or requiring continuing ethics education certification may reduce perceived ethical misconduct among neuropsychological professionals in Spain.

Research Nurse | Center for Cancer Research

Cancer.gov

We are looking for research nurses to join our clinical program to help us manage the care of patients participating in clinical trials. Duties include, but are not limited to, ensuring adherence to ethical practice in the conduct of clinical trials, research protocol compliance and good clinical practice, ensuring patient comprehension of informed consent, management of care

Practical and Ethical Concerns in Collaborative Research with Criminal Justice Decision Makers.

ERIC Educational Resources Information Center

Gottfredson, Gary D.

After discussing some of the complex, sensitive issues involved in doing policy-related research, this paper describes a strategy for social scientists to use in doing collaborative research with criminal justice agencies. The strategy calls for: (1) careful selection of programs or practices on which to conduct research; (2) collaboration with…

Rejecting the Null: Research and Social Justice Means Asking Different Questions

ERIC Educational Resources Information Center

Chapman, Stephanie; Schwartz, Jonathan P.

2012-01-01

The focus of this article is on the specific ethical issues related to social justice research and the practical implications of engaging in social justice research, including the potential impact of research results on practice, policy, and advocacy at the local and national level. Specific recommendations are offered, including identifying…

Code of ethics for the national pharmaceutical system: Codifying and compilation

PubMed Central

Salari, Pooneh; Namazi, Hamidreza; Abdollahi, Mohammad; Khansari, Fatemeh; Nikfar, Shekoufeh; Larijani, Bagher; Araminia, Behin

2013-01-01

Pharmacists as one of health-care providers face ethical issues in terms of pharmaceutical care, relationship with patients and cooperation with the health-care team. Other than pharmacy, there are pharmaceutical companies in various fields of manufacturing, importing or distributing that have their own ethical issues. Therefore, pharmacy practice is vulnerable to ethical challenges and needs special code of conducts. On feeling the need, based on a shared project between experts of the ethics from relevant research centers, all the needs were fully recognized and then specified code of conduct for each was written. The code of conduct was subject to comments of all experts involved in the pharmaceutical sector and thus criticized in several meetings. The prepared code of conduct is comprised of professional code of ethics for pharmacists, ethics guideline for pharmaceutical manufacturers, ethics guideline for pharmaceutical importers, ethics guideline for pharmaceutical distributors, and ethics guideline for policy makers. The document was compiled based on the principles of bioethics and professionalism. The compiling the code of ethics for the national pharmaceutical system is the first step in implementing ethics in pharmacy practice and further attempts into teaching the professionalism and the ethical code as the necessary and complementary effort are highly recommended. PMID:24174954

Discussion of solutions to ethical issues in real-world study.

PubMed

Wang, Sicheng; Liu, Baoyan; Xiong, Ningning; Xie, Qi; Zhang, Runshun; Zhou, Xuezhong; Qiao, Jie

2014-09-01

In recent years, the paradigm of real-world study (RWS) has been at the forefront of clinical research worldwide, particularly in the field of traditional Chinese medicine. In this paper, basic features and nature of real-world clinical studies are discussed, and ethical issues in different stages of RWS are raised and reviewed. Moreover, some preliminary solutions to these issues, such as protecting subjects during the process of RWS and performing ethical review, are presented based on recent practices and basic ethical rules to improve the scientific validity and ethical level of RWS.

Ethical aspects of malaria control and research.

PubMed

Jamrozik, Euzebiusz; de la Fuente-Núñez, Vânia; Reis, Andreas; Ringwald, Pascal; Selgelid, Michael J

2015-12-22

Malaria currently causes more harm to human beings than any other parasitic disease, and disproportionally affects low-income populations. The ethical issues raised by efforts to control or eliminate malaria have received little explicit analysis, in comparison with other major diseases of poverty. While some ethical issues associated with malaria are similar to those that have been the subject of debate in the context of other infectious diseases, malaria also raises distinct ethical issues in virtue of its unique history, epidemiology, and biology. This paper provides preliminary ethical analyses of the especially salient issues of: (i) global health justice, (ii) universal access to malaria control initiatives, (iii) multidrug resistance, including artemisinin-based combination therapy (ACT) resistance, (iv) mandatory screening, (v) mass drug administration, (vi) benefits and risks of primaquine, and (vii) malaria in the context of blood donation and transfusion. Several ethical issues are also raised by past, present and future malaria research initiatives, in particular: (i) controlled infection studies, (ii) human landing catches, (iii) transmission-blocking vaccines, and (iv) genetically-modified mosquitoes. This article maps the terrain of these major ethical issues surrounding malaria control and elimination. Its objective is to motivate further research and discussion of ethical issues associated with malaria--and to assist health workers, researchers, and policy makers in pursuit of ethically sound malaria control practice and policy.

Bioethical Issues in Providing Financial Incentives to Research Participants

PubMed Central

Resnik, David B.

2015-01-01

Offering research subjects financial incentives for their participation is a common practice that boosts recruitment but also raises ethical concerns, such as undue inducement, exploitation, and biased enrollment. This article reviews the arguments for providing participants with financial incentives, ethical concerns about payment, and approaches to establishing appropriate compensation levels. It also makes recommendations for investigators, institutions, and oversight committees. PMID:26807399

A BRIEF HISTORY OF BIOMEDICAL RESEARCH ETHICS IN IRAN: CONFLICT OF PARADIGMS

PubMed Central

ARAMESH, KIARASH

2014-01-01

During the past two decades, Iran has experienced a noteworthy growth in its biomedical research sector. At the same time, ethical concerns and debates resulting from this burgeoning enterprise has led to increasing attention paid to biomedical ethics. In Iran, Biomedical research ethics and research oversight passed through major periods during the past decades, separated by a paradigm shift. Period 1, starting from the early 1970s, is characterized by research paternalism and complete reliance on researchers as virtuous and caring physicians. This approach was in concordance with the paternalistic clinical practice of physicians outside of research settings during the same period. Period 2, starting from the late 1990s, was partly due to revealing of ethical flaws that occurred in biomedical research in Iran. The regulatory and funding bodies concluded that it was not sufficient to rely solely on the personal and professional virtues of researchers to safeguard human subjects’ rights and welfare. The necessity for independent oversight, emphasized by international declarations, became obvious and undeniable. This paradigm shift led to the establishment of research ethics committees throughout the country, the establishment of academic research centers focusing on medical ethics (MEHR) and the compilation of the first set of national ethical guidelines on biomedical research–one of the first and most important projects conducted by and in the MEHR. Although not yet arrived, ‘period 3’ is on its way. It is predictable from the obvious trends toward performance of high-quality clinical research and the appearance of a highly educated new generation, especially among women. PMID:24720443

Ethical Issues in Radiology Journalism, Peer Review, and Research.

PubMed

Katz, Douglas S; Gardner, James B; Hoffmann, Jason C; Patlas, Michael N; Bhargava, Puneet; Moshiri, Mariam; Remer, Erick M; Gould, Elaine S; Smith, Stacy

2016-08-17

Although some research and publication practices are clearly unethical, including fraud and plagiarism, other areas of research and publication, such as informed consent and conflicts of interest, fall into grayer areas. The purposes of this article are, therefore, to review a variety of relevant ethical issues in radiology-related journalism, peer review, and research; to review the radiology literature to date that has addressed these issues; and to present position statements and potential solutions to these problems.

[Institutional ethics committees in Mexico: the ambiguous boundary between health care ethics and research ethics].

PubMed

Valdez-Martínez, Edith; Lifshitz-Guinzberg, Alberto; Medesigo-Micete, José; Bedolla, Miguel

2008-08-01

To identify ethics committees in medical practice in Mexico and possible implications stemming from their composition and functions. A cross-sectional descriptive study was conducted from January-December 2005. A survey was sent by e-mail to the hospitals and family medicine centers with at 10 practices within the Mexican Institute for Social Security (Instituto Mexicano del Seguro Social) (n=437) and the Institute for Security and Social Services for State Employees (Seguridad y Servicios Sociales de los Trabajadores del Estado) (n=167) and to the Mexican Ministry of Health's most important health care centers (n=15). The following items were analyzed: name of the committee, date of formation, current status, composition, functions, and level of authority. In all, 116 committees were identified, with various names. Of these, 101 (87.1%) were active. The committees were formed from 1985-2006, with a spike occurring in 2004-2005. Of the active committees, 59 (58.4%) were charged with ethical problems/dilemmas related to clinical practice as well as those related to research projects. Of the committee members, 357 (59.0%) held managing positions in the establishment to which the committee pertained; most were medical professionals (71.5%), followed by nursing staff (11.9%). Among the members of the active committees, 77.9% had not received training in ethics. Legal conflicts can be expected, mainly within the organizations whose committees have the authority to determine a course of action. An integrated plan is needed that will set standards for the composition and proceedings of Mexico's ethics committees and the improved training of committee members.

Views of academic and community partners regarding participant protections and research integrity: a pilot focus group study.

PubMed

Anderson, Emily E

2013-02-01

When community partners have direct interaction with human research participants, it is important to consider potential threats to participant protections and research integrity. Few studies have directly compared the views of academic and community partners. This pilot focus group study explores the views of academic partners (APs) and community partners (CPs) regarding challenges to the protection of research participants and research integrity in community-engaged research (CEnR). Data are analyzed to understand how APs and CPs define and think about ethical problems and how meaning and analysis may differ between the two groups. Findings have implications for the development of research ethics training materials for academic-community research partnerships and IRBs; best practices for CEnR; and future research on ethical issues in CEnR.

Research governance: implications for health library and information professionals.

PubMed

Sen, Barbara A

2003-03-01

The Research Governance Framework for Health and Social Care published by the Department of Health in 2001 provides a model of best practice and a framework for research in the health and social care sector. This article reviews the Department of Health Research Governance Framework, discusses the implications of research governance for library and information professionals undertaking research in the health- and social-care sector and recommends strategies for best practice within the information profession relating to research governance. The scope of the Framework document that covers both clinical and non-clinical research is outlined. Any research involving, amongst other issues, patients, NHS staff and use or access to NHS premises may require ethics committee approval. Particular reference is made to the roles, responsibilities and professional conduct and the systems needed to support effective research practice. Issues such as these combine to encourage the development of a quality research culture which supports best practice. Questions arise regarding the training and experience of researchers, and access to the necessary information and support. The use of the Framework to guide research practice complements the quality issues within the evidence-based practice movement and supports the ongoing development of a quality research culture. Recommendations are given in relation to the document's five domains of ethics, science, information, health and safety and finance and intellectual property. Practical recommendations are offered for incorporating research governance into research practice in ways which conform to the Framework's standards and which are particularly relevant for research practitioners in information science. Concluding comments support the use of the Research Governance Framework as a model for best practice.

Ethical issues in action-oriented research in Indonesia.

PubMed

Rachmawaty, Rini

2017-09-01

Action-oriented research is one of the most frequent research types implemented to transform community health in Indonesia. Three researchers and 11 graduate students from a developed country in East Asia conducted a fieldwork program in a remote area in South Sulawesi Province. Although the project was completed, whether or not the international standards for human subject research were applied into that study remains unclear. This study aimed to examine ethical issues raised from that case, analyze constraints to the problems, and recommend alternatives to protect vulnerable populations from being exploited by local/international researchers. A problem-solving approach was used in this study. It began with problem identification, evaluation of the action-oriented research goal, investigation of the constraints to the problem, and recommendation of some relevant alternatives to address the central issue. Ethical Consideration: The approval for conducting the action-oriented research that being investigated in this work was only obtained from the Head of local district. Some ethical issues were found in this case. No special protection for this population, no informed consent was obtained from the participants, exposure to social and economic risks, no future benefits for the subjects, and conflict of interests. Lack of control from the local research ethics committee and lack of competence of local researchers on human subject research were considered as the constraints to the problems. Creating an independent research ethics committee, providing research ethics training to the local researchers, obtaining written/video consents from underserved populations, and meeting local health needs were recommended alternatives to solve these problems. Indonesian government bodies should reform their international collaborative system on research involving human subjects. Exploitation may not occur if all participants as well as all local and national governing bodies understand the research ethics on human subjects and apply it into their practice.

A study of nurses' ethical climate perceptions: Compromising in an uncompromising environment.

PubMed

Humphries, Anne; Woods, Martin

2016-05-01

Acting ethically, in accordance with professional and personal moral values, lies at the heart of nursing practice. However, contextual factors, or obstacles within the work environment, can constrain nurses in their ethical practice - hence the importance of the workplace ethical climate. Interest in nurse workplace ethical climates has snowballed in recent years because the ethical climate has emerged as a key variable in the experience of nurse moral distress. Significantly, this study appears to be the first of its kind carried out in New Zealand. The purpose of this study was to explore and describe how registered nurses working on a medical ward in a New Zealand hospital perceive their workplace ethical climate. This was a small, qualitative descriptive study. Seven registered nurses were interviewed in two focus group meetings. An inductive method of thematic data analysis was used for this research. Ethics approval for this study was granted by the New Zealand Ministry of Health's Central Regional Health and Disability Ethics Committee on 14 June 2012. The themes identified in the data centred on three dominant elements that - together - shaped the prevailing ethical climate: staffing levels, patient throughput and the attitude of some managers towards nursing staff. While findings from this study regarding staffing levels and the power dynamics between nurses and managers support those from other ethical climate studies, of note is the impact of patient throughput on local nurses' ethical practice. This issue has not been singled out as having a detrimental influence on ethical climates elsewhere. Moral distress is inevitable in an ethical climate where the organisation's main priorities are perceived by nursing staff to be budget and patient throughput, rather than patient safety and care. © The Author(s) 2015.

Need for ethics support in healthcare institutions: views of Dutch board members and ethics support staff.

PubMed

Dauwerse, Linda; Abma, Tineke; Molewijk, Bert; Widdershoven, Guy

2011-08-01

The purpose of this article is to investigate the need for ethics support in Dutch healthcare institutions in order to understand why ethics support is often not used in practice and which factors are relevant in this context. This study had a mixed methods design integrating quantitative and qualitative research methods. Two survey questionnaires, two focus groups and 17 interviews were conducted among board members and ethics support staff in Dutch healthcare institutions. Most respondents see a need for ethics support. This need is related to the complexity of contemporary healthcare, the contribution of ethics support to the core business of the organisation and to the surplus value of paying structural attention to ethical issues. The need for ethics support is, however, not unconditional. Reasons for a lacking need include: aversion of innovations, negative associations with the notion of ethics support service, and organisational factors like resources and setting. There is a conditioned need for ethics support in Dutch healthcare institutions. The promotion of ethics support in healthcare can be fostered by focusing on formats which fit the needs of (practitioners in) healthcare institutions. The emphasis should be on creating a (culture of) dialogue about the complex situations which emerge daily in contemporary healthcare practice.

From “a Fair Game” to “a Form of Covert Research”: Research Ethics Committee Members’ Differing Notions of Consent and Potential Risk to Participants Within Social Media Research

PubMed Central

Derrick, G. E.

2018-01-01

Social media (SM) research presents new challenges for research ethics committees (RECs) who must balance familiar ethical principles with new notions of public availability. This article qualitatively examines how U.K. REC members view this balance in terms of risk and consent. While it found significant variance overall, there were discernible experience-based trends. REC members with less experience of reviewing SM held inflexible notions of consent and risk that could be categorized as either relying on traditional notions of requiring direct consent, or viewing publicly available data as “fair game.” More experienced REC members took a more nuanced approach to data use and consent. We conclude that the more nuanced approach should be best practice during ethical review of SM research. PMID:29350083

Expected Ethical Competencies of Public Health Professionals and Graduate Curricula in Accredited Schools of Public Health in North America

PubMed Central

Wright, Brandy; Semaan, Salaam

2013-01-01

Objectives. We assessed expected ethics competencies of public health professionals in codes and competencies, reviewed ethics instruction at schools of public health, and recommended ways to bridge the gap between them. Methods. We reviewed the code of ethics and 3 sets of competencies, separating ethics-related competencies into 3 domains: professional, research, and public health. We reviewed ethics course requirements in 2010–2011 on the Internet sites of 46 graduate schools of public health and categorized courses as required, not required, or undetermined. Results. Half of schools (n = 23) required an ethics course for graduation (master’s or doctoral level), 21 did not, and 2 had no information. Sixteen of 23 required courses were 3-credit courses. Course content varied from 1 ethics topic to many topics addressing multiple ethics domains. Conclusions. Consistent ethics education and competency evaluation can be accomplished through a combination of a required course addressing the 3 domains, integration of ethics topics in other courses, and “booster” trainings. Enhancing ethics competence of public health professionals is important to address the ethical questions that arise in public health research, surveillance, practice, and policy. PMID:22994177

"You can't be cold and scientific": community views on ethical issues in intellectual disability research.

PubMed

McDonald, Katherine E; Schwartz, Nicole M; Gibbons, Colleen M; Olick, Robert S

2015-04-01

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety. © The Author(s) 2015.

“You Can’t be Cold and Scientific”: Community Views on Ethical Issues in Intellectual Disability Research

PubMed Central

McDonald, Katherine E.; Schwartz, Nicole M.; Gibbons, Colleen M.; Olick, Robert S.

2015-01-01

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety. PMID:25769310

When the science fails and the ethics works: 'Fail-safe' ethics in the FEM-PrEP study.

PubMed

Kingori, Patricia

2015-12-01

This paper will explore the concept of 'fail safe' ethics in the FEM PrEP trial, and the practice of research and ethics on the ground. FEM-PrEP examined the efficacy of PrEP in African women after promising outcomes in research conducted with MSM. This was a hugely optimistic time and FEM-PrEP was mobilised using rights-based ethical arguments that women should have access to PrEP. This paper will present data collected during an ethnographic study of frontline research workers involved in FEM-PrEP. During our discussions, 'fail-safe' ethics emerged as concept that encapsulated their confidence that their ethics could not fail. However, in 2011, FEM-PrEP was halted and deemed a failure. The women involved in the study were held responsible because contrary to researcher's expectations they were not taking the oral PrEP being researched. This examination of FEM-PrEP will show that ethical arguments are increasingly deployed to mobilise, maintain and in some cases stop trials in ways which, at times, are superseded or co-opted by other interests. While promoting the interests of women, rights-based approaches are argued to indirectly justify the continuation of individualised, biomedical interventions which have been problematic in other women-centred trials. In this examination of FEM-PrEP, the rights-based approach obscured: ethical concerns beyond access to PrEP; the complexities of power relationships between donor and host countries; the operations of the HIV industry in research-saturated areas and the cumulative effect of unfilled expectations in HIV research and how this has shaped ideas of research and ethics.

Photography and Social Media Use in Community-Based Participatory Research with Youth: Ethical Considerations

PubMed Central

Santacrose, Diana; Liu, Sabrina

2017-01-01

Community-based participatory researchers increasingly incorporate photography and social media into their work. Despite its relative infancy, social media has created a powerful network that allows individuals to convey messages quickly to a widespread audience. In addition to its potential benefits, the use of social media in research also carries risk, given the fast pace of exchanges, sharing of personal images and ideas in high accessibility, low privacy contexts and continually shifting options and upgrades. This article contributes to the literature examining ethical considerations for photography and social media use in community-based participatory research. We describe three key ethical dilemmas that we encountered during our participatory photography project with Latina/o youth: (a) use and content of images and risk; (b) incentives and coercion; and (c) social media activity and confidentiality. We provide our responses to these challenges, contextualized in theory and practice, and share lessons learned. We raise the question of how to contend with cultural shifts in boundaries and privacy. We propose that evaluating participant vulnerability versus potential empowerment may be more fitting than the standard approach of assessing risks and benefits. Finally, we recommend upholding the principles of participatory research by co-producing ethical practices with one’s participants. PMID:28944473

A student's perspective on medical ethics education.

PubMed

Terndrup, Christopher

2013-12-01

Despite many efforts to increase ethics education in US medical schools, barriers continue to arise that impede the production of morally driven physicians who practice medicine with ideal empathy. Research has shown that, particularly during the clinical years, medical students lose the ability both to recognize ethical dilemmas and to approach such situations with compassionate reasoning. This article summarizes the current status of ethics education in US medical schools, described through the eyes of and alongside the story of a graduating medical student.

The dual use of research ethics committees: why professional self-governance falls short in preserving biosecurity.

PubMed

Salloch, Sabine

2018-06-05

Dual Use Research of Concern (DURC) constitutes a major challenge for research practice and oversight on the local, national and international level. The situation in Germany is shaped by two partly competing suggestions of how to regulate security-related research: The German Ethics Council, as an independent political advisory body, recommended a series of measures, including national legislation on DURC. Competing with that, the German National Academy of Sciences and the German Research Foundation, as two major professional bodies, presented a strategy which draws on the self-control of science and, inter alia, suggests expanding the scope of research ethics committees (RECs) to an evaluation of DURC. This situation is taken as an occasion to further discuss the scope and limits of professional self-control with respect to security-related research. The role of RECs as professional bodies of science is particularly analyzed, referring to the theoretical backgrounds of professionalism. Two key sociological features of professionalism - ethical orientation and professional self-control - are discussed with respect to the practice of biomedical science. Both attributes are then analyzed with respect to the assessment of DURC by RECs. In conclusion, it is stated that issues of biosecurity transcend the boundaries of the scientific community and that a more comprehensive strategy should be implemented encompassing both professional self-control and legal oversight.

Gendered negotiations for research participation in community-based studies: implications for health research policy and practice

PubMed Central

Kamuya, Dorcas M; Molyneux, Catherine, S; Theobald, Sally

2017-01-01

There is a growing literature documenting the complex realities of consent processes in the field, and the negotiations and ethical dilemmas involved. Much has also been written about how gender and power shape household decision-making processes. However, these bodies of literature have rarely been brought together to inform research theory and practice in low-income settings. In this paper, qualitative research (observation, focus group discussions and interviews) were used alongside large clinical community-based studies conducted on the Kenyan Coast to explore how gender and power relations within households and communities and between fieldworkers and communities shape consent processes and interactions. This exploration is embedded in relevant literature and the implications for community-based health research policy and practice are considered. Across diverse forms of households, we observed significant consultation on whether or not to participate in research. Although men are typically described as household decision-makers, in practice, decision-making processes are often far more nuanced, with many women using their agency to control, sometimes subtly, the decisions made. Where decisions are made without adequately consulting women, many find strategies to exercise their choice, in ways that safeguard important relationships within households in the longer term. We also found that the gender of field staff who typically conduct research activities in the field, including consent processes, can influence household dynamics and decision-making processes with important implications for the science and ethics of research. It is essential that frontline field staff and their supervisors are aware of the complex and gendered realities of consent processes at household level, and their implications, and that they develop appropriate context-informed approaches that support ethical practice. PMID:29225935

Cross-border data exchange - a case study on international collaboration gone wrong

NASA Astrophysics Data System (ADS)

Yanko-Hombach, Valentina

2016-04-01

The subject of ethics in science has become a hot topic recently (Gleick, 2011). As publication pressure on researchers increases and use of the internet allows faster turn-around, the quality of the peer review process has suffered. This presentation describes one case of scientific ethics violation in which the editors of a high-ranking scientific journal improperly permitted publication of a paper that was based upon unethical acquisition of data and failed to acknowledge scientific collaboration and exchange of intellectual property. We will present "Case description" and "Ethical issues" with a hope that our experience draws attention to important ethical issues in international collaborative research, and prevents such misconduct in the future. Since international research involves cooperation and coordination among many people in different disciplines and institutions across national borders, ethical standards should promote values that are essential to integrity and collaborative work, including trust, accountability, mutual respect, and fairness. One lesson to be learned is not to engage in collaboration without a written agreement stating clearly who is responsible for what and how the results of collaborative research are to be shared. This is especially important in cases of international collaborations, particularly those involving smaller or developing nations who often do not have the high-tech facilities of developed nations. There is also need to establish clear regulations regarding co-authorship on papers in which intellectual property and significant financial investment was made to allow the research to proceed. As such, a system of ethics to guide the practice of science from data collection to publication and beyond is timely and much needed to protect the integrity of scientific collaboration. It will keep science moving forward by validating research findings and confirming or raising questions about results. References Benos, D. J., Fabres, J., Farmer, J., Gutierrez, J.P., Hennessy, K., Kosek, D., Joo Hyoung Lee, Olteanu, D., Russell, T., Shaikh, F., Wang, K. 2005. Ethics and scientific publication. Adv. Physiol. Educ. 29: 59-74. Gleick, P. 2011. AGU's new task force on scientific ethics and integrity begins work. EOS 92(47): 22. Guidelines for responsible conduct of research. http://www.provost.pitt.edu/documents/GUIDELINES FOR ETHICAL PRACTICES IN RESEARCH-FINALrevised2-March 2011.pdf

Ethical Standards of the American Association for Counseling and Development.

ERIC Educational Resources Information Center

Journal of Counseling and Development, 1988

1988-01-01

Presents principles that define the ethical behavior of American Association for Counseling and Development members. In addition to 11 general principles, includes principles on the counseling relationship, measurement and evaluation, research and publication, consulting, private practice, personnel administration, and preparation standards. (ABL)

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study

PubMed Central

Hiriscau, Elisabeta Ioana; Stingelin-Giles, Nicola; Wasserman, Danuta; Reiter-Theil, Stella

2016-01-01

Research with minors, especially for preventive purposes, e.g., suicide prevention, investigating risk or self-destructive behaviors such as deviance, drug abuse, or suicidal behavior, is ethically sensitive. We present a Delphi study exploring the ethical implications of the needs formulated by researchers in an international pre-conference who would benefit from ethics support and guidance in conducting Mental Health Research with minors. The resulting List of Ethical Issues (LEI) was submitted to a 2-rounds Delphi process via the Internet, including 34 multidisciplinary experts. In the first round, the experts reviewed the LEI and completed a questionnaire. Results from this round were analyzed and grouped in nine categories comprising 40 items. In the second round, the experts had to agree/disagree with the needs expressed in the LEI leading to a final list of 25 ethical issues considered relevant for Mental Health Research with minors such as: confidentiality of the sensitive data, competence for consenting alone and risk of harm and stigma related to the methodology used in research. It was shown that studies like SEYLE (Saving and Empowering Young Lives in Europe) trigger among researchers wishes to obtain specific recommendations helping to comply with standards for good practice in conducting research with minors. PMID:27187425

Identifying Ethical Issues in Mental Health Research with Minors Adolescents: Results of a Delphi Study.

PubMed

Hiriscau, Elisabeta Ioana; Stingelin-Giles, Nicola; Wasserman, Danuta; Reiter-Theil, Stella

2016-05-11

Research with minors, especially for preventive purposes, e.g., suicide prevention, investigating risk or self-destructive behaviors such as deviance, drug abuse, or suicidal behavior, is ethically sensitive. We present a Delphi study exploring the ethical implications of the needs formulated by researchers in an international pre-conference who would benefit from ethics support and guidance in conducting Mental Health Research with minors. The resulting List of Ethical Issues (LEI) was submitted to a 2-rounds Delphi process via the Internet, including 34 multidisciplinary experts. In the first round, the experts reviewed the LEI and completed a questionnaire. Results from this round were analyzed and grouped in nine categories comprising 40 items. In the second round, the experts had to agree/disagree with the needs expressed in the LEI leading to a final list of 25 ethical issues considered relevant for Mental Health Research with minors such as: confidentiality of the sensitive data, competence for consenting alone and risk of harm and stigma related to the methodology used in research. It was shown that studies like SEYLE (Saving and Empowering Young Lives in Europe) trigger among researchers wishes to obtain specific recommendations helping to comply with standards for good practice in conducting research with minors.

Promoting human subjects training for place-based communities and cultural groups in environmental research: curriculum approaches for graduate student/faculty training.

PubMed

Quigley, Dianne

2015-02-01

A collaborative team of environmental sociologists, community psychologists, religious studies scholars, environmental studies/science researchers and engineers has been working together to design and implement new training in research ethics, culture and community-based approaches for place-based communities and cultural groups. The training is designed for short and semester-long graduate courses at several universities in the northeastern US. The team received a 3 year grant from the US National Science Foundation's Ethics Education in Science and Engineering in 2010. This manuscript details the curriculum topics developed that incorporate ethical principles, particularly for group protections/benefits within the field practices of environmental/engineering researchers.

Pregnant women with substance use disorders: The intersection of history, ethics, and advocacy.

PubMed

Acquavita, Shauna P; Kauffman, Sandra S; Talks, Alexandra; Sherman, Kate

2016-01-01

Pregnant women with substance use disorders face many obstacles, including obtaining evidence-based treatment and care. This article (1) briefly reviews the history of pregnant women in clinical trials and substance use disorders treatment research; (2) identifies current ethical issues facing researchers studying pregnant women with substance use disorders; (3) presents and describes an ethical framework to utilize; and (4) identifies future directions needed to develop appropriate research and treatment policies and practices. Current research is not providing enough information to clinicians, policy-makers, and the public about maternal and child health and substance use disorders, and the data will not be sufficient to offer maximum benefit until protocols are changed.

The role of community health workers (CHWs) in health promotion research: ethical challenges and practical solutions.

PubMed

Terpstra, Jennifer; Coleman, Karen J; Simon, Gayle; Nebeker, Camille

2011-01-01

This article aims to describe the role of community health workers (CHWs) in health promotion research and address the challenges and ethical concerns associated with this research approach. A series of six focus groups are conducted with project managers and investigators (n = 5 to 11 per session) who have worked with CHWs in health promotion research. These focus groups are part of a larger study funded by the National Institutes of Health titled "Training in Research Ethics and Standards" (Project TRES). Participants are asked to describe their training needs for CHWs with respect to human subject protections as well as to identify associated challenges regarding research practice (i.e., recruitment, random assignment, protocol implementation, etc.). Findings reveal a number of challenges that investigators and project managers encounter when working with CHWs on research projects involving the community. These include characteristics inherent to CHWs such as education level and personal beliefs about their own community and its needs, institutional regulations regarding research practice, and problems inherent to research studies such as training materials and protocols that cannot account for the complexity of conducting research in community settings. Investigators should carefully consider the role that CHWs have in their communities before creating research programs that depend on the CHWs' existing social networks and their propensity to be natural helpers. These strengths could lead to compromises in research requirements for random assignment, control groups, and fully informed consent.

Ethical Issues Raised by Private Practice Physiotherapy Are More Diverse than First Meets the Eye: Recommendations from a Literature Review

PubMed Central

Drolet, Marie-Josée; Williams-Jones, Bryn

2015-01-01

ABSTRACT Purpose: Physiotherapy in private practice differs from physiotherapy practised in a public setting in several ways, the most evident of which is the for-profit nature of private physiotherapy clinics; these differences can generate distinct and challenging ethical issues. The objectives of this article are to identify ethical issues encountered by physiotherapists in private practice settings and to identify potential solutions and recommendations to address these issues. Method: After a literature search of eight databases, 39 studies addressing ethical issues in a private practice context were analyzed. Results: A total of 25 ethical issues emerging from the included studies were classified into three main categories: (1) business and economic issues (e.g., conflicts of interests, inequity in a managed care context, lack of time affecting quality of care); (2) professional issues (e.g., professional autonomy, clinical judgment, treatment effectiveness, professional conduct); and (3) patients' rights and welfare issues (e.g., confidentiality, power asymmetries, paternalism vs. patient autonomy, informed consent). Recommendations as to how physiotherapists could better manage these issues were then identified and categorized. Conclusions: The physiotherapy community should reflect on the challenges raised by private practice so that professionals can be supported—through education, research, and good governance—in providing the best possible care for their patients. PMID:25931663

Research ethics in the post-genomic era.

PubMed

Vähäkangas, Kirsi

2013-08-01

New high-throughput 'omics techniques are providing exciting opportunities in clinical medicine and toxicology, especially in the development of biomarkers. In health science research there are traditional ethical considerations that are reasonably obvious, like balancing health benefits and health risks, autonomy mainly pursued by informed consent, and protecting privacy. Epidemiological studies applying new large-scale approaches (e.g., high-throughput or high-content methods and global studies that utilize biobanking of samples and produce large-scale datasets) present new challenges that call for re-evaluation of standard ethical considerations. In this context, assessment of the ethics underlying study designs, bioinformatics, and statistics applied in the generation and clinical translation of research results should also be considered. Indeed, there are ethical considerations in the research process itself, in research objectives and how research is pursued (e.g., which methodologies are selected and how they are carried out). Maintaining research integrity is critical, as demonstrated by the relatively frequent retraction of scientific papers following violations of good scientific practice. Abiding by the laws is necessary but not sufficient for good research ethics, which is and remains in the hands of the scientific community at the level of both individual scientists and organizations. Senior scientists are responsible for the transfer of research tradition to the next generation of scientists through education, mentorship, and setting an example by their own behavior, as well as by creating systems in institutions that support good research ethics. Copyright © 2013 Wiley Periodicals, Inc.

Moving It Along: A study of healthcare professionals' experience with ethics consultations.

PubMed

Crigger, Nancy; Fox, Maria; Rosell, Tarris; Rojjanasrirat, Wilaiporn

2017-05-01

Ethics consultation is the traditional way of resolving challenging ethical questions raised about patient care in the United States. Little research has been published on the resolution process used during ethics consultations and on how this experience affects healthcare professionals who participate in them. The purpose of this qualitative research was to uncover the basic process that occurs in consultation services through study of the perceptions of healthcare professionals. The researchers in this study used a constructivist grounded theory approach that represents how one group of professionals experienced ethics consultations in their hospital in the United States. The results were sufficient to develop an initial theory that has been named after the core concept: Moving It Along. Three process stages emerged from data interpretation: moral questioning, seeing the big picture, and coming together. It is hoped that this initial work stimulates additional research in describing and understanding the complex social process that occurs for healthcare professionals as they address the difficult moral issues that arise in clinical practice.

Preventing chronic disease in patients with low health literacy using eHealth and teamwork in primary healthcare: protocol for a cluster randomised controlled trial

PubMed Central

Parker, Sharon M; Stocks, Nigel; Nutbeam, Don; Thomas, Louise; Denney-Wilson, Elizabeth; Zwar, Nicholas; Karnon, Jon; Lloyd, Jane; Noakes, Manny; Lau, Annie; Osborne, Richard

2018-01-01

Introduction Adults with lower levels of health literacy are less likely to engage in health-promoting behaviours. Our trial evaluates the impacts and outcomes of a mobile health-enhanced preventive intervention in primary care for people who are overweight or obese. Methods and analysis A two-arm pragmatic practice-level cluster randomised trial will be conducted in 40 practices in low socioeconomic areas in Sydney and Adelaide, Australia. Forty patients aged 40–70 years with a body mass index ≥28 kg/m2 will be enrolled per practice. The HeLP-general practitioner (GP) intervention includes a practice-level quality improvement intervention (medical record audit and feedback, staff training and practice facilitation visits) to support practices to implement the clinical intervention for patients. The clinical intervention involves a health check visit with a practice nurse based on the 5As framework (assess, advise, agree, assist and arrange), the use of a purpose-built patient-facing app, my snapp, and referral for telephone coaching. The primary outcomes are change in health literacy, lifestyle behaviours, weight, waist circumference and blood pressure. The study will also evaluate changes in quality of life and health service use to determine the cost-effectiveness of the intervention and examine the experiences of practices in implementing the programme. Ethics and dissemination The study has been approved by the University of New South Wales (UNSW) Human Research Ethics Committee (HC17474) and ratified by the University of Adelaide Human Research Ethics committee. There are no restrictions on publication, and findings of the study will be made available to the public via the Centre for Primary Health Care and Equity website and through conference presentations and research publications. Deidentified data and meta-data will be stored in a repository at UNSW and made available subject to ethics committee approval. Trial Registration number ACTRN12617001508369; Pre-results. PMID:29866737

Cross-cultural perspectives of scientific misconduct.

PubMed

Momen, Hooman; Gollogly, Laragh

2007-09-01

The increasing globalization of scientific research lends urgency to the need for international agreement on the concepts of scientific misconduct. Universal spiritual and moral principles on which ethical standards are generally based indicate that it is possible to reach international agreement on the ethical principles underlying good scientific practice. Concordance on an operational definition of scientific misconduct that would allow independent observers to agree which behaviour constitutes misconduct is more problematic. Defining scientific misconduct to be universally recognized and universally sanctioned means addressing the broader question of ensuring that research is not only well-designed - and addresses a real need for better evidence - but that it is ethically conducted in different cultures. An instrument is needed to ensure that uneven ethical standards do not create unnecessary obstacles to research, particularly in developing countries.

A Brief History of Biomedical Research Ethics in Iran: Conflict of Paradigms.

PubMed

Aramesh, Kiarash

2015-08-01

During the past two decades, Iran has experienced a noteworthy growth in its biomedical research sector. At the same time, ethical concerns and debates resulting from this burgeoning enterprise has led to increasing attention paid to biomedical ethics. In Iran, Biomedical research ethics and research oversight passed through major periods during the past decades, separated by a paradigm shift. Period 1, starting from the early 1970s, is characterized by research paternalism and complete reliance on researchers as virtuous and caring physicians. This approach was in concordance with the paternalistic clinical practice of physicians outside of research settings during the same period. Period 2, starting from the late 1990s, was partly due to revealing of ethical flaws that occurred in biomedical research in Iran. The regulatory and funding bodies concluded that it was not sufficient to rely solely on the personal and professional virtues of researchers to safeguard human subjects' rights and welfare. The necessity for independent oversight, emphasized by international declarations, became obvious and undeniable. This paradigm shift led to the establishment of research ethics committees throughout the country, the establishment of academic research centers focusing on medical ethics (MEHR) and the compilation of the first set of national ethical guidelines on biomedical research-one of the first and most important projects conducted by and in the MEHR. Although not yet arrived, 'period 3' is on its way. It is predictable from the obvious trends toward performance of high-quality clinical research and the appearance of a highly educated new generation, especially among women. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.

Beyond individualism: Is there a place for relational autonomy in clinical practice and research?

PubMed Central

Kelly, Susan E; Lucivero, Federica; Machirori, Mavis; Dheensa, Sandi; Prainsack, Barbara

2017-01-01

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person’s care and responsibility for connected others. PMID:28989327

Ethical aspects of directly observed treatment for tuberculosis: a cross-cultural comparison

PubMed Central

2013-01-01

Background Tuberculosis is a major global public health challenge, and a majority of countries have adopted a version of the global strategy to fight Tuberculosis, Directly Observed Treatment, Short Course (DOTS). Drawing on results from research in Ethiopia and Norway, the aim of this paper is to highlight and discuss ethical aspects of the practice of Directly Observed Treatment (DOT) in a cross-cultural perspective. Discussion Research from Ethiopia and Norway demonstrates that the rigid enforcement of directly observed treatment conflicts with patient autonomy, dignity and integrity. The treatment practices, especially when imposed in its strictest forms, expose those who have Tuberculosis to extra burdens and costs. Socially disadvantaged groups, such as the homeless, those employed as day labourers and those lacking rights as employees, face the highest burdens. Summary From an ethical standpoint, we argue that a rigid practice of directly observed treatment is difficult to justify, and that responsiveness to social determinants of Tuberculosis should become an integral part of the management of Tuberculosis. PMID:23819555

Auditing of clinical research ethics in a children's and women's academic hospital.

PubMed

Bortolussi, Robert; Nicholson, Diann

2002-06-01

Canadian and international guidelines for research ethics practices have advocated that research ethics boards (REBs) should implement mechanisms to review and monitor human research. Despite this, few Canadian REBs fulfil this expectation. The objective of this report is to summarize the results of 6 audits of clinical research ethics conducted between 1992 and 2000 in a children's and women's academic hospital in Canada in an effort to guide other academic centres planning a similar process. Research audits were conducted by members of a research audit review committee made up of REB volunteers. With use of random and selective processes, approximately 10% of research protocols were audited through interviews with research investigators and research coordinators and by sampling research records. Predetermined criteria were used to assess evidence of good record keeping, data monitoring, adherence to protocol, consents and the recording of adverse events during the research study. An estimate of time required to undertake an audit was made by recall of participants and records. Thirty-five research studies were reviewed including 16 multicentre clinical trials and 19 single-site clinical studies. Review of record keeping and research practice revealed some deficiencies: researchers failed to maintain original authorization (7%) or renewal documentation (9%); there was 1 instance of improper storage of medication; in 5% of 174 participants for whom consent was reviewed, an outdated consent form had been used, and in 4% the signature of the enrolee was not properly shown. Other deficiencies in consent documentation occurred in less than 2% of cases. Nineteen recommendations were made with respect to deficiencies and process issues. A total of 9 to 20 person-hours are required to review each protocol in a typical audit of this type. Information from research audits has been useful to develop educational programs to correct deficiencies identified through the audits. The research audit is a valuable tool in improving research ethics performance but requires considerable resources.

Mechanisms Linking Ethical Leadership to Ethical Sales Behavior.

PubMed

Wu, Yu-Chi

2017-06-01

This study investigated the relationship between ethical leadership and ethical sales behavior. A total of 248 matched surveys with participant responses from insurance agents and their customers were collected. The insurance agents were asked to rate the ethical leadership of their leaders, the ethical climate in their organization, and their individual moral identity. Customers were asked to rate the perceived ethical sales behavior of the insurance agents. This empirical study utilized moderated mediation techniques to analyze the data. Results indicated that ethical climate mediated the relationship between ethical leadership and ethical sales behavior when moral identity was high, however, did not when moral identity was low. The research framework including contextual effects (i.e., ethical climate) and individual differences in moral judgment (i.e., moral identity) can provide a comprehensive picture of how ethical leadership influences ethical sales behavior. Theoretical and practical implications of these findings are also discussed.

Ethical difficulties in nursing, educational needs and attitudes about using ethics resources.

PubMed

Leuter, Cinzia; Petrucci, Cristina; Mattei, Antonella; Tabassi, Gianpietro; Lancia, Loreto

2013-05-01

Ethical difficulties arise in healthcare practices. However, despite extensive research findings that demonstrate that most nurses are involved in recurrent ethical problems, institutions are not always able to effectively support nursing care professionals. The limited availability of ethics consultation services and traditional nursing training fails to meet the frequent and strong requests by health workers to support their ethical dilemmas. A questionnaire was administered to 374 nurses attending a specialist training and a lifetime learning programme in Italy. The respondents reported a high frequency of ethically sensitive situations, and they described the poor development of ethics support and a scarcity of ethics training programmes. The results suggest the importance of promoting ethics services that include consultation and ethics training. A need for systematic ethics educational activities was identified for improving the capacity of nurses to manage ethical issues in patient care.

Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics.

PubMed

Ogunrin, Olubunmi A; Ogundiran, Temidayo O; Adebamowo, Clement

2013-01-02

The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria. This was a three-phased evaluation study. Phase one involved development of an online training module based on the Nigerian Code of Health Research Ethics (NCHRE) and uploading it to the Collaborative Institutional Training Initiative (CITI) website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach's alpha. The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001) with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach's alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants suggested that awareness of the online module should be increased through seminars, advertisement on government websites and portals used by Nigerian biomedical researchers, and incorporation of the Code into the undergraduate medical training curriculum.

Accountability: The Ethics of Devising a Practice-as-Research Performance with Learning-Disabled Practitioners

ERIC Educational Resources Information Center

Leighton, Fran

2009-01-01

This article discusses the dilemmas encountered by non-disabled performance researchers and practitioners working with learning-disabled people. I demonstrate how the "accounts" of empirical social scientists informed my PARIP [practice-as-research-in-performance] project, "BluYesBlu," and how Judith Butler's reformulation of the concept of…

Leader-follower value congruence in social responsibility and ethical satisfaction: a polynomial regression analysis.

PubMed

Kang, Seung-Wan; Byun, Gukdo; Park, Hun-Joon

2014-12-01

This paper presents empirical research into the relationship between leader-follower value congruence in social responsibility and the level of ethical satisfaction for employees in the workplace. 163 dyads were analyzed, each consisting of a team leader and an employee working at a large manufacturing company in South Korea. Following current methodological recommendations for congruence research, polynomial regression and response surface modeling methodologies were used to determine the effects of value congruence. Results indicate that leader-follower value congruence in social responsibility was positively related to the ethical satisfaction of employees. Furthermore, employees' ethical satisfaction was stronger when aligned with a leader with high social responsibility. The theoretical and practical implications are discussed.

Ethical dilemmas among nurses as they transition to hospital case management: implications for organizational ethics, part I.

PubMed

O'Donnell, Lolita T

2007-01-01

To describe the experiences of ethical concerns by clinical nurses as they transitioned into their new role in hospital case management. Through this study, an attempt was made to explore experiences of ethical concerns and identify the implications for organizational ethics. In this study, nurse case managers practicing in the acute hospital setting, military, not-for-profit community, and teaching hospitals were interviewed. The majority of the nurse case manager participants were engaged in hospital discharge planning and utilization review activities. An interpretive phenomenological approach was used to identify the themes inherent in ethical concerns and articulate them within the context of hospital nurse case management. Fifteen participants were interviewed to obtain a qualitative description of the nurse case managers' lived experiences of ethical dilemmas and how they were resolved. Nurse case managers' perceptions of solutions/options to resolve such ethical dilemmas were explored. As nurses transition into the expanded role of case management in the present healthcare delivery system, they frequently face situations demanding ethical choices and judgments to accommodate diverse patient interests and needs. These ethical decisions required in daily practice in case management represent ethical dilemmas to nurses. The insights derived from the analysis of the interviews have implications for nursing practice, education, policy, ethics, and research; recommendations for organizations employing nurse case managers in terms of recruitment, orientation, training, and continued need for educational support are identified. 1. The clinical decisions required in daily practice of case management represented challenges to the nurses. This highlights the critical role of adequate educational orientation to case management for beginning case managers. 2. Nurse case managers should be cognizant of the "disconnect" that could occur between their obligations to the organizations that employ them and the healthcare needs of the patients that they advocate for. 3. Aside from the importance of linking patient care outcomes with accountability, nurse case managers may need to advocate for policy change and system reform.

Teaching virtue: pedagogical implications of moral psychology.

PubMed

Frey, William J

2010-09-01

Moral exemplar studies of computer and engineering professionals have led ethics teachers to expand their pedagogical aims beyond moral reasoning to include the skills of moral expertise. This paper frames this expanded moral curriculum in a psychologically informed virtue ethics. Moral psychology provides a description of character distributed across personality traits, integration of moral value into the self system, and moral skill sets. All of these elements play out on the stage of a social surround called a moral ecology. Expanding the practical and professional curriculum to cover the skills and competencies of moral expertise converts the classroom into a laboratory where students practice moral expertise under the guidance of their teachers. The good news is that this expanded pedagogical approach can be realized without revolutionizing existing methods of teaching ethics. What is required, instead, is a redeployment of existing pedagogical tools such as cases, professional codes, decision-making frameworks, and ethics tests. This essay begins with a summary of virtue ethics and informs this with recent research in moral psychology. After identifying pedagogical means for teaching ethics, it shows how these can be redeployed to meet a broader, skills based agenda. Finally, short module profiles offer concrete examples of the shape this redeployed pedagogical agenda would take in the practical and professional ethics classroom.

Beyond demarcation: Care ethics as an interdisciplinary field of inquiry.

PubMed

Leget, Carlo; van Nistelrooij, Inge; Visse, Merel

2017-01-01

For many years the body of literature known as 'care ethics' or 'ethics of care' has been discussed as regards its status and nature. There is much confusion and little structured discussion. The paper of Klaver et al. (2014) was written as a discussion article to which we respond. We aim to contribute to the ongoing discussion about the status and nature of care ethics. Responding to 'Demarcation of the ethics of care as a discipline' by Klaver et al. (2014) and 'Three versions of an ethics of care' by Edwards (2009), we identified shared concerns and formulated criticisms of both texts in order to develop an alternative view. Participants and research context: This paper has been written from the academic context of a master in care ethics an policy. Ethical considerations: We have tried to be fair and respectful to the authors discussed. Both Klaver et al. (2014) and Edwards (2009) raise important concerns about the question if care ethics can be considered an academic discipline, and to what extend it can be seen as a moral theory. Despite shared concerns, their arguments fail to convince us in all respects. We propose to conceive care ethics as an interdisciplinary field of inquiry, incorporating a dialectical relation between empirical research and theoretical reflection. Departing from the notion of caring as a practice of contributing to a life-sustaining web, we argue that care ethics can only profit from a loosely organized academic profile that allows for flexibility and critical attitude that brings us close to the good emerging in specific practices. This asks for ways of searching for a common focus and interest that is inherently democratic and dialogical and thus beyond demarcation.

Audiology: student perception of preceptor and fellow student ethics.

PubMed

Franklin, Clifford; Vesely, Brian; White, Letitia; Mantie-Kozlowski, Alana; Franklin, Clay

2014-01-01

Health care professionals are expected to uphold high ethical standards. Recently, ethical practices in health care have received increased scrutiny and study in an effort to ensure that clinicians meet such high ethical standards in serving their patients and clients. The American Academy of Audiology's Code of Ethics establishes professional standards that allow for the proper discharge of an audiologist's responsibilities while maintaining the integrity of the profession. Under this code, student academy members are included and required to abide by the code, the same as practicing members. The code is composed of a preamble and eight principles. The present study provides an overview of students' perceptions across a broad spectrum of ethical topics governing our profession. Specifically, this study examined audiology students' perceptions of preceptor ethics relating to these eight principles using an online survey. Responses were collected from 143 of 600 audiology students contacted and indicated that they believed that their preceptors consistently followed each of the eight principles. Results also indicated that students believe fellow students also behave ethically and that it is the primary responsibility of academic faculty, not preceptors, to teach ethics. It can be concluded that preceptors are perceived by their students to be acting with high ethical standards. However, more research and discussion may be needed to determine who should teach these ethics to students.

No need to go! Workplace studies and the resources of the revised National Statement.

PubMed

Cordner, Christopher; Thomson, Colin

2007-07-01

In their article 'Unintended consequences of human research ethics committees: au revoir workplace studies?', Greg Bamber and Jennifer Sappey set out some real obstacles in the practices and attitudes of some Human Research Ethics Committees (HRECs), to research in the social sciences and particulalry in industrial sociology. They sheet home these attitudes and practices to the way in which various statements in the NHMRC's National Statement [1999] are implemented, which they say is often in 'conflict with an important stream of industrial sociological research' in Australia. They do not discuss the recently completed revision of the NS. We undertake to show that the revised National Statement meets their concerns about research in industrial sociology, and to draw attention to the resources of the revised National Statement that engage with those concerns. A more general aim is to display the greater scope, in the revised National Statement, for researchers to show to HRECs that their research is justified by virutue of its reflecting the established methodology and traditions of their discipline. The revised National Statement, we suggest, provides for a more flexible and responsive approach than its predecessor to the ethical review of many areas of research.

Ethical challenges in resuscitation.

PubMed

Mentzelopoulos, Spyros D; Slowther, Anne-Marie; Fritz, Zoe; Sandroni, Claudio; Xanthos, Theodoros; Callaway, Clifton; Perkins, Gavin D; Newgard, Craig; Ischaki, Eleni; Greif, Robert; Kompanje, Erwin; Bossaert, Leo

2018-06-01

A rapidly evolving resuscitation science provides more effective treatments to an aging population with multiple comorbidites. Concurrently, emergency care has become patient-centered. This review aims to describe challenges associated with the application of key principles of bioethics in resuscitation and post-resuscitation care; propose actions to address these challenges; and highlight the need for evidence-based ethics and consensus on ethical principles interpretation. Following agreement on the article's outline, subgroups of 2-3 authors provided narrative reviews of ethical issues concerning autonomy and honesty, beneficence/nonmaleficence and dignity, justice, specific practices/circumstances such as family presence during resuscitation, and emergency research. Proposals for addressing ethical challenges were also offered. Respect for patient autonomy can be realized through honest provision of information, shared decision-making, and advance directives/care planning. Essential prerequisites comprise public and specific healthcare professionals' education, appropriate regulatory provisions, and allocation of adequate resources. Regarding beneficence/nonmaleficence, resuscitation should benefit patients, while avoiding harm from futile interventions; pertinent practice should be based on neurological prognostication and patient/family-reported outcomes. Regarding dignity, aggressive life-sustaining treatments against patients preferences should be avoided. Contrary to the principle of justice, resuscitation quality may be affected by race/income status, age, ethnicity, comorbidity, and location (urban versus rural or country-specific/region-specific). Current evidence supports family presence during resuscitation. Regarding emergency research, autonomy should be respected without hindering scientific progress; furthermore, transparency of research conduct should be promoted and funding increased. Major ethical challenges in resuscitation science need to be addressed through complex/resource-demanding interventions. Such actions require support by ongoing/future research.

Evolution of Ethics in Clinical Research and Ethics Committee

PubMed Central

Das, Nilay Kanti; Sil, Amrita

2017-01-01

Ethics are the moral values of human behavior and the principles which govern these values. The situation becomes challenging for a doctor when he assumes the role of researcher. The doctor-researcher has to serve both the roles and at times the zeal of an investigator has the potential to cloud the morality of the physician inside. It is very important to realize that exploiting the faith of patients is an offence that tantamount to a crime. Medical science is one discipline where the advancement of knowledge is hugely guided by research and mankind has benefitted from many experiments. However benefit and risk are the two faces of the same coin. Various unethical human experiments made us realize that the whims of researchers need to be reined and led to the evolution of the first guidelines for researcher, the Nuremberg code. Thereafter the Good Clinical Practice guidelines serve as the guiding doctrine of clinical research. The principles of ethics rest on the four pillars of autonomy, beneficence, justice, non-maleficence and recently two more pillars are added which includes, confidentiality and honesty. Ethics committees serve as a guardian of these principles. The multidisciplinary Ethics Committee ensures a competent review of the ethical aspects of the project proposal submitted and does it free from any bias or external influence. Ethical review of clinical trial applications follows a decentralized process in India, and requires Ethics Committee approval for each trial site. All Ethics committees have to be registered with Drug Controller General of India (DCGI) without which they cannot approve any clinical trial protocol and has come into effect from 25th February 2013. PMID:28794547

Evolution of Ethics in Clinical Research and Ethics Committee.

PubMed

Das, Nilay Kanti; Sil, Amrita

2017-01-01

Ethics are the moral values of human behavior and the principles which govern these values. The situation becomes challenging for a doctor when he assumes the role of researcher. The doctor-researcher has to serve both the roles and at times the zeal of an investigator has the potential to cloud the morality of the physician inside. It is very important to realize that exploiting the faith of patients is an offence that tantamount to a crime. Medical science is one discipline where the advancement of knowledge is hugely guided by research and mankind has benefitted from many experiments. However benefit and risk are the two faces of the same coin. Various unethical human experiments made us realize that the whims of researchers need to be reined and led to the evolution of the first guidelines for researcher, the Nuremberg code. Thereafter the Good Clinical Practice guidelines serve as the guiding doctrine of clinical research. The principles of ethics rest on the four pillars of autonomy, beneficence, justice, non-maleficence and recently two more pillars are added which includes, confidentiality and honesty. Ethics committees serve as a guardian of these principles. The multidisciplinary Ethics Committee ensures a competent review of the ethical aspects of the project proposal submitted and does it free from any bias or external influence. Ethical review of clinical trial applications follows a decentralized process in India, and requires Ethics Committee approval for each trial site. All Ethics committees have to be registered with Drug Controller General of India (DCGI) without which they cannot approve any clinical trial protocol and has come into effect from 25th February 2013.

Views of Academic and Community Partners Regarding Participant Protections and Research Integrity: A Pilot Focus Group Study

PubMed Central

Anderson, Emily E.

2013-01-01

When community partners have direct interaction with human research participants, it is important to consider potential threats to participant protections and research integrity. Few studies have directly compared the views of academic and community partners. This pilot focus group study explores the views of academic partners (APs) and community partners (CPs) regarding challenges to the protection of research participants and research integrity in community-engaged research (CEnR). Data are analyzed to understand how APs and CPs define and think about ethical problems and how meaning and analysis may differ between the two groups. Findings have implications for the development of research ethics training materials for academic-community research partnerships and IRBs; best practices for CEnR; and future research on ethical issues in CEnR. PMID:23485668

Paediatric physician-researchers: coping with tensions in dual accountability.

PubMed

Boydell, Katherine; Shaul, Randi Zlotnik; D'Agincourt-Canning, Lori; Da Silva, Michael; Simpson, Christy; Czoli, Christine D; Rashkovan, Natalie; Kim, Celine C; Levin, Alex V; Schneider, Rayfel

2012-01-01

Potential conflicts between the roles of physicians and researchers have been described at the theoretical level in the bioethics literature (Czoli, et al., 2011). Physicians and researchers are generally in mutually distinct roles, responsible for patients and participants respectively. With increasing emphasis on integration of research into clinical settings, however, the role divide is sometimes unclear. Consequently, physician-researchers must consider and negotiate salient ethical differences between clinical- and research-based obligations (Miller et al, 1998). This paper explores the subjective experiences and perspectives of 30 physician-researchers working in three Canadian paediatric settings. Drawing on qualitative interviews, it identifies ethical challenges and strategies used by physician-researchers in managing dual roles. It considers whether competing obligations could have both positive and adverse consequences for both physician-researchers and patients. Finally, we discuss how empirical work, which explores the perspectives of those engaged in research and clinical practice, can lead the way to understanding and promoting best practice.

Ethical issues in medical research in the developing world: a report on a meeting organised by Fondation Mérieux.

PubMed

Perrey, Christophe; Wassenaar, Douglas; Gilchrist, Shawn; Ivanoff, Bernard

2009-08-01

This paper reports on a multidisciplinary meeting held to discuss ethical issues in medical research in the developing world. Many studies, including clinical trials, are conducted in developing countries with a high burden of disease. Conditions under which this research is conducted vary because of differences in culture, public health, political, legal and social contexts specific to these countries. Research practices, including standards of care for participants, may vary as a result. It is therefore not surprising that ethical issues emerge. This meeting sought to identify and discuss these issues from the perspectives of the many actors in such research, including community representatives, with a view to finding ethical and pragmatic solutions to these issues. Dialogue between these actors was also promoted, with a view to identifying the need to develop such dialogue in future. Drawing from the experiences of the speakers, the colloquium attempted to outline some answers to several key questions characterising the field today. Experiences related to epidemiologic research, vaccine trials, drug trials, diagnostic tests and to some fundamental ethical issues in health research. Speakers were from different countries, disciplines and professions. The meeting provided a forum for consultation and debate between different ethics actors. Both encouraging findings and challenges emerged.

Ethical challenges in developing drugs for psychiatric disorders.

PubMed

Carrier, Felix; Banayan, David; Boley, Randy; Karnik, Niranjan

2017-05-01

As the classification of mental disorders advances towards a disease model as promoted by the National Institute of Mental Health (NIMH) Research Domain Criteria (RDoC), there is hope that a more thorough neurobiological understanding of mental illness may allow clinicians and researchers to determine treatment efficacy with less diagnostic variability. This paradigm shift has presented a variety of ethical issues to be considered in the development of psychiatric drugs. These challenges are not limited to informed consent practices, industry funding, and placebo use. The consideration for alternative research models and quality of research design also present ethical challenges in the development of psychiatric drugs. The imperatives to create valid and sound research that justify the human time, cost, risk and use of limited resources must also be considered. Clinical innovation, and consideration for special populations are also important aspects to take into account. Based on the breadth of these ethical concerns, it is particularly important that scientific questions regarding the development of psychiatric drugs be answered collaboratively by a variety of stakeholders. As the field expands, new ethical considerations will be raised with increased focus on genetic markers, personalized medicine, patient-centered outcomes research, and tension over funding. We suggest that innovation in trial design is necessary to better reflect practices in clinical settings and that there must be an emphasized focus on expanding the transparency of consent processes, regard for suicidality, and care in working with special populations to support the goal of developing sound psychiatric drug therapies. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Ethical dilemmas of a large national multi-centre study in Australia: time for some consistency.

PubMed

Driscoll, Andrea; Currey, Judy; Worrall-Carter, Linda; Stewart, Simon

2008-08-01

To examine the impact and obstacles that individual Institutional Research Ethics Committee (IRECs) had on a large-scale national multi-centre clinical audit called the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study. Multi-centre research is commonplace in the health care system. However, IRECs continue to fail to differentiate between research and quality audit projects. The National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes study used an investigator-developed questionnaire concerning a clinical audit for heart failure programmes throughout Australia. Ethical guidelines developed by the National governing body of health and medical research in Australia classified the National Benchmarks and Evidence-based National Clinical guidelines for Heart failure management programmes Study as a low risk clinical audit not requiring ethical approval by IREC. Fifteen of 27 IRECs stipulated that the research proposal undergo full ethical review. None of the IRECs acknowledged: national quality assurance guidelines and recommendations nor ethics approval from other IRECs. Twelve of the 15 IRECs used different ethics application forms. Variability in the type of amendments was prolific. Lack of uniformity in ethical review processes resulted in a six- to eight-month delay in commencing the national study. Development of a national ethics application form with full ethical review by the first IREC and compulsory expedited review by subsequent IRECs would resolve issues raised in this paper. IRECs must change their ethics approval processes to one that enhances facilitation of multi-centre research which is now normative process for health services. The findings of this study highlight inconsistent ethical requirements between different IRECs. Also highlighted are the obstacles and delays that IRECs create when undertaking multi-centre clinical audits. However, in our clinical practice it is vital that clinical audits are undertaken for evaluation purposes. The findings of this study raise awareness of inconsistent ethical processes and highlight the need for expedient ethical review for clinical audits.

Evaluating moral reasoning in nursing education.

PubMed

McLeod-Sordjan, Renee

2014-06-01

Evidence-based practice suggests the best approach to improving professionalism in practice is ethics curricula. However, recent research has demonstrated that millennium graduates do not advocate for patients or assert themselves during moral conflicts. The aim of this article is the exploration of evaluation techniques to evaluate one measurable outcome of ethics curricula: moral reasoning. A review of literature, published between 1995 and 2013, demonstrated that the moral orientations of care and justice as conceptualized by Gilligan and Kohlberg are utilized by nursing students to solve ethical dilemmas. Data obtained by means of reflective journaling, Ethics of Care Interview (ECI) and Defining Issues Test (DIT), would objectively measure the interrelated pathways of care-based and justice-based moral reasoning. In conclusion, educators have an ethical responsibility to foster students' ability to exercise sound clinical judgment, and support their professional development. It is recommended that educators design authentic assessments to demonstrate student's improvement of moral reasoning. © The Author(s) 2013.

When Ethics Constrains Clinical Research: Trial Design of Control Arms in “Greater Than Minimal Risk” Pediatric Trials

PubMed Central

de Melo-Martín, Inmaculada; Sondhi, Dolan

2011-01-01

Abstract For more than three decades clinical research in the United States has been explicitly guided by the idea that ethical considerations must be central to research design and practice. In spite of the centrality of this idea, attempting to balance the sometimes conflicting values of advancing scientific knowledge and protecting human subjects continues to pose challenges. Possible conflicts between the standards of scientific research and those of ethics are particularly salient in relation to trial design. Specifically, the choice of a control arm is an aspect of trial design in which ethical and scientific issues are deeply entwined. Although ethical quandaries related to the choice of control arms may arise when conducting any type of clinical trials, they are conspicuous in early phase gene transfer trials that involve highly novel approaches and surgical procedures and have children as the research subjects. Because of children's and their parents' vulnerabilities, in trials that investigate therapies for fatal, rare diseases affecting minors, the scientific and ethical concerns related to choosing appropriate controls are particularly significant. In this paper we use direct gene transfer to the central nervous system to treat late infantile neuronal ceroid lipofuscinosis to illustrate some of these ethical issues and explore possible solutions to real and apparent conflicts between scientific and ethical considerations. PMID:21446781

Ethical principles in health research and review process.

PubMed

Tangwa, Godfrey B

2009-11-01

In this paper I want to reflect on the fundamental ethical principles and their application in different particular contexts, especially in health research and the ethics review process. Four fundamental ethical principles have been identified and widely discussed in bioethical literature. These principles namely are: autonomy or respect for others, beneficence, non-maleficence and justice. These principles have cross-cultural validity, relevance and applicability. Every real-life situation and every concrete particular case in which ethical decision-making is called-for is unique and different from all others; but the same fundamental ethical principles are relevant and used in addressing all such cases and situations. Very often ethical problems will present themselves in the form of dilemmas and it is then necessary to use the same fundamental principles to analyze the situations, to argue persuasively and cogently with competence for the best options or choices in such situations. The issues I will be dealing with in this paper are necessarily more abstract and theoretical, but we will be discussing them from a very practical viewpoint and impulse, with a view to application in concrete real-life situations. The paper ends with some sample practical examples of cases that the reader can use to test his/her grasp of the principles, how to apply them, how to balance them in differing situations and contexts and how to adjudicate between them when they seem to be in conflict.

Truth in Advertising: Disclosure of Participant Payment in Research Recruitment Materials.

PubMed

Gelinas, Luke; Lynch, Holly Fernandez; Largent, Emily A; Shachar, Carmel; Cohen, I Glenn; Bierer, Barbara E

2018-05-01

The practice of paying research participants has received significant attention in the bioethics literature, but the focus has been almost exclusively on consideration of factors relevant to determining acceptable payment amounts. Surprisingly little attention has been paid to what happens once the payment amount is set. What are the ethical parameters around how offers of payment may be advertised to prospective participants? This article seeks to answer this question, focusing on the ethical and practical issues associated with disclosing information about payment, and payment amounts in particular, in recruitment materials. We argue that it is permissible-and indeed typically ethically desirable-for recruitment materials to disclose the amount that participants will be paid. Further, we seek to clarify the regulatory guidance on "emphasizing" payment in a way that can facilitate design and review of recruitment materials.

Professional Ethics in Astronomy: The AAS Ethics Statement

NASA Astrophysics Data System (ADS)

Marvel, Kevin B.

2013-01-01

It is fundamental to the advancement of science that practicing scientists adhere to a consistent set of professional ethical principles. Recent violations of these principles have led a decreased trust in the process of science and scientific results. Although astronomy is less in the spotlight on these issues than medical science or climate change research, it is still incumbent on the field to follow sound scientific process guided by basic ethical guidelines. The American Astronomical Society, developed a set of such guidelines in 2010. This contribution summarizes the motivation and process by which the AAS Ethics Statement was produced.

Predictors of nurse practitioners' autonomy: effects of organizational, ethical, and market characteristics.

PubMed

Ulrich, Connie; Soeken, Karen; Miller, Nancy

2003-07-01

To identify the predictors of autonomy of nurse practitioners (NPs) affiliated directly and/or indirectly with managed-care systems (e.g., HMOs). A mailed survey sent to a stratified random sample of 254 NPs certified and licensed to practice in the state of Maryland. The measures consisted of selected organizational characteristics; market factors of HMO penetration and percentage of client population enrolled in managed care; and factors of ethical concern, such as ethical ideology, ethics education, and autonomy. The County Surveyor Database was used to assess market penetration in the state. Although NPs were ethically concerned about their autonomy in a managed-care environment (70.2%), actual autonomy scores were high. The higher the percentage of HMO penetration, percentage of client population enrolled in managed care, and perceived ethical concern, the lower the perceived autonomy of NPs. Findings may be used for future research to address the complexity of variables that influence the autonomous practice of NPs.

The old faith and the new science: the Nuremberg Code and human experimentation ethics in Britain, 1946-73.

PubMed

Hazelgrove, Jenny

2002-04-01

This article explores the impact of the Nuremberg Code on post-Second World War research ethics in Britain. Against the background of the Nuremberg Medical Trial, the Code received international endorsement, but how much did its ethical percepts influence actual research? This paper shows that, despite British involvement in the formulation of the Code, the experience of war-time and changing career structures were more influential in shaping the approach of investigators to their subjects. Where medical debates ensued, primarily over controversial research practices at the British Postgraduate Medical School, Hammersmith Hospital, they were set in the context of a much older division between 'bedside' and 'scientific' medicine. But whatever differences there may have been between those physicians who advocated research and those who questioned its use and ethical basis, most clung to the paternalist assumption that it was the doctor's place to decide what was best for his patients. Faced with rising public and medical criticism of contemporary research practices, the medical élite of the 1960s and 1970s safeguarded the reputation of the profession and medical control of research by negotiating new voluntary codes. In a similar move, their predecessors had helped to negotiate the Nuremberg Code in anticipation of public criticism of experimentation arising from the Nuremberg Medical Trial.

The evolution of ethics for community practice.

PubMed

Racher, Frances E

2007-01-01

Defining the community as client or partner requires a different ethical approach, an approach focused on the aggregate, community, or societal level. A discussion of rule ethics, virtue ethics, and feminist ethics transports the community practitioner beyond traditional ethical principles to consider a more contemporary ethical foundation for public health and community practice. Inclusion, diversity, participation, empowerment, social justice, advocacy, and interdependence create an evolving ethical foundation to support community practice. Collaboration among health care professionals and members of the organizations, communities, and societies in which they practice will facilitate the further development of moral thought and ethical theory to underpin community practice.

Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and strategies.

PubMed

Novek, Sheila; Wilkinson, Heather

2017-01-01

Aim Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. Objectives This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Methods Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Findings Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. Conclusion By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

Surgical innovation: the ethical agenda: A systematic review.

PubMed

Broekman, Marike L; Carrière, Michelle E; Bredenoord, Annelien L

2016-06-01

The aim of the present article was to systematically review the ethics of surgical innovation and introduce the components of the learning health care system to guide future research and debate on surgical innovation.Although the call for evidence-based practice in surgery is increasingly high on the agenda, most surgeons feel that the format of the randomized controlled trial is not suitable for surgery. Innovation in surgery has aspects of, but should be distinguished from both research and clinical care and raises its own ethical challenges.To answer the question "What are the main ethical aspects of surgical innovation?", we systematically searched PubMed and Embase. Papers expressing an opinion, point of view, or position were included, that is, normative ethical papers.We included 59 studies discussing ethical aspects of surgical innovation. These studies discussed 4 major themes: oversight, informed consent, learning curve, and vulnerable patient groups. Although all papers addressed the ethical challenges raised by surgical innovation, surgeons hold no uniform view of surgical innovation, and there is no agreement on the distinction between innovation and research. Even though most agree to some sort of oversight, they offer different alternatives ranging from the formation of new surgical innovation committees to establishing national registries. Most agree that informed consent is necessary for innovative procedures and that surgeons should be adequately trained to assure their competence to tackle the learning curve problem. All papers agree that in case of vulnerable patients, alternatives must be found for the informed consent procedure.We suggest that the concept of the learning health care system might provide guidance for thinking about surgical innovation. The underlying rationale of the learning health care system is to improve the quality of health care by embedding research within clinical care. Two aspects of a learning health care system might particularly enrich the necessary future discussion on surgical innovation: integration of research and practice and a moral emphasis on "learning activities." Future research should evaluate whether the learning health care system and its adjacent moral framework provides ethical guidance for evidence-based surgery.

Scaling ethics up and down: moral craft in clinical genetics and in global health research.

PubMed

Parker, Michael

2015-01-01

This paper engages with the question of what it is to 'do good medical ethics' in two ways. It begins with an exploration of what it might mean to say that health professionals practise good medical ethics as part of practising good ethical medicine. Using the example of the Genethics Club, a well-established national ethics forum for genetics professionals in the UK, the paper develops an account of moral craftsmanship grounded in the concepts of shared moral commitments and practices, moral work, ethics and living morality. In the light of this discussion, the paper goes on to consider what it might mean for a specialist in medical ethics, a bioethicist, to do good medical ethics. Finally, a research agenda focusing on the challenges of thinking about good medical ethics in a global context and a proposal for an innovative approach to bioethics methodology is outlined. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

PubMed

Northway, Ruth; Howarth, Joyce; Evans, Lynne

2015-02-01

The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

Ethical issues in gastroenterology research.

PubMed

Eastwood, Gregory L

2015-03-01

Ethical issues have become increasingly important in gastroenterology research. This is for several reasons, including (i) an understanding of how conflicts of interest might affect research, (ii) the influence of the drug and device industries on research, (iii) ghostwriting (taking credit for something you did not write), (iv) the occurrence of ethically inappropriate research and scientific misconduct, and (v) respect for the rights of research subjects. These include the rights (i) to give informed consent to participate after understanding the purposes, risks, and benefits of the research; (ii) to ask questions; and (iii) to withdraw from participation at any time. Notions of doing good (beneficence), avoiding harm (non-maleficence), confidentiality, and, most important, the primacy of the welfare of the patient or research subject can be traced to antiquity. In the modern era, the Nuremburg Code (1947), the Declaration of Helsinki (1964), the Belmont report (1979), and other events and reports have led to the refinement of ethical practices in both clinical and research domains, have reinforced those long observed principles, and have given rise to the newer principles of autonomy and justice. The ethical conduct of research not only promotes good research but also is in the best interests of research subjects, investigators, sponsors, patients, and the public. © 2015 Journal of Gastroenterology and Hepatology Foundation and Wiley Publishing Asia Pty Ltd.

The investigation of life-threatening child abuse and Munchausen syndrome by proxy.

PubMed Central

Evans, D

1995-01-01

The use of covert video surveillance in the investigation of suspected life-threatening child abuse and Munchausen syndrome by proxy raises important ethical questions. That the recently reported provision of this facility in North Staffordshire was not presented to a Local Research Ethics Committee (LREC) for approval as a research exercise raises important questions about the ethical review of research and practice. The case made for avoiding such review is first set out and then examined. The three main premisses which form the basis of the view that LREC approval is not required are identified and tested in turn. The conclusion is that there is an undeniable element of research involved in the procedure and that the welfare of all those subjected to the surveillance would be best protected by the submission of the protocol to an independent committee for ethical assessment. PMID:7776355

Anticipated Ethics and Regulatory Challenges in PCORnet: The National Patient-Centered Clinical Research Network.

PubMed

Ali, Joseph; Califf, Robert; Sugarman, Jeremy

2016-01-01

PCORnet, the National Patient-Centered Clinical Research Network, seeks to establish a robust national health data network for patient-centered comparative effectiveness research. This article reports the results of a PCORnet survey designed to identify the ethics and regulatory challenges anticipated in network implementation. A 12-item online survey was developed by leadership of the PCORnet Ethics and Regulatory Task Force; responses were collected from the 29 PCORnet networks. The most pressing ethics issues identified related to informed consent, patient engagement, privacy and confidentiality, and data sharing. High priority regulatory issues included IRB coordination, privacy and confidentiality, informed consent, and data sharing. Over 150 IRBs and five different approaches to managing multisite IRB review were identified within PCORnet. Further empirical and scholarly work, as well as practical and policy guidance, is essential if important initiatives that rely on comparative effectiveness research are to move forward.

Science, ethics and war: a pacifist's perspective.

PubMed

Kovac, Jeffrey

2013-06-01

This article considers the ethical aspects of the question: should a scientist engage in war-related research, particularly use-inspired or applied research directed at the development of the means for the better waging of war? Because scientists are simultaneously professionals, citizens of a particular country, and human beings, they are subject to conflicting moral and practical demands. There are three major philosophical views concerning the morality of war that are relevant to this discussion: realism, just war theory and pacifism. In addition, the requirements of professional codes of ethics and common morality contribute to an ethical analysis of the involvement of scientists and engineers in war-related research and technology. Because modern total warfare, which is facilitated by the work of scientists and engineers, results in the inevitable killing of innocents, it follows that most, if not all, war-related research should be considered at least as morally suspect and probably as morally prohibited.

Emerging issues in paediatric health research consent forms in Canada: working towards best practices

PubMed Central

2013-01-01

Background Obtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements. Methods Employing a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics boards, participants, and studies. The studies included biobanking, longitudinal studies, and gene-environment studies. Our purpose was to explore the following six emerging issues: (1) whether the scope of parental consent allows for a child’s assent, dissent, or future consent; (2) whether the concepts of risk and benefit incorporate the child’s psychological and social perspective; (3) whether a child’s ability to withdraw is respected and to what extent withdrawal is permitted; (4) whether the return of research results includes individual results and/or incidental findings and the processes involved therein; (5) whether privacy and confidentiality concerns adequately address the child’s perspective and whether standard data and/or sample identifiability nomenclature is used; and (6) whether retention of and access to paediatric biological samples and associated medical data are addressed. Results The review suggests gaps and variability in the consent forms with respect to addressing each of the six issues. Many forms did not discuss the possibility of returning research results, be they individual or general/aggregate results. Forms were also divided in terms of the scope of parental consent (specific versus broad), and none discussed a process for resolving disputes that can arise when either the parents or the child wishes to withdraw from the study. Conclusions The analysis provides valuable insight and evidence into how consent forms address current ethical issues. While we do not thoroughly explore the contexts and reasons behind consent form gaps and variability, we do advocate and formulate the development of best practices for drafting paediatric health research consent forms. This can greatly ameliorate current gaps and facilitate harmonised and yet contextualised approaches to paediatric health research ethics. PMID:23363554

The Vulnerability of Study Participants in the Context of Transnational Biomedical Research: From Conceptual Considerations to Practical Implications.

PubMed

Orth, Helen Grete; Schicktanz, Silke

2017-08-01

Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- (middle)-income countries - summarized as transnational biomedical research (TBR) - has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the World Medical Association or the Ethical Guidelines for Biomedical Research Involving Human Subjects by the Council of International Organizations of Medical Sciences refer to vulnerability as ethical principle, each of their approaches are different. To overcome these shortcomings, we analyze and unite different approaches of vulnerability and develop practical criteria in order to operationalize the concept especially for the context of TBR. These criteria refer to the context of a study as well as the characteristics and the current living situation of study participants. Based on a case study of an HIV-vaccine-trial conducted in India we demonstrate how those criteria can be applied in a retrospective way to identify potential ethical conflicts. The criteria can also indicate a prospective function for ethical pre-assessment. For this, we provide an outlook for three major topics: 1. Vulnerability as a normative concept: Different ways of protection; 2. The relevance of transparency and 3. Vulnerability as an instrument to increase decision participation of human subjects. © 2016 John Wiley & Sons Ltd.

Pharmacists' Assessment of the Difficulty and Frequency of Ethical Issues Encountered in Community Pharmacy Settings.

PubMed

Crnjanski, Tatjana; Krajnovic, Dusanka; Savic, Mirko

2017-05-23

Researching ethical problems and their frequency could give us a complex picture and greater insight into the types of ethical issues that pharmacists face in providing health care. The overall aim of this study was to assess the pharmacist's perception of difficulty and frequency of selected ethical issues encountered by the community pharmacists in their everyday practice. A quantitative cross sectional multicenter study was performed using a validated survey instrument - Ethical Issue Scale for Community Pharmacy (EISP). The results of the analysis of 690 completely filled out instruments (response rate 78.49%) showed the difference between the ethical issues which always occurred ("A pharmacist is prevented from dispensing a medicine to the patient due to an administrative error in the prescription"), and the ones that pharmacists found most difficult ("A pharmacist dispenses a medicine he/she personally considers inadequate for the therapeutic treatment of the patient, in order to avoid any conflicts with the physician" and "A pharmacist is considering violating the rules and regulations in order to perform an act of humanity"). The majority of respondents (84.78%) were familiar with the Code of Ethics but the correlation between the familiarity and the perceived usefulness of the code in resolving problems in everyday practice was negative (ρ = -0.17, p < 0.001). Results showed that patients' well-being had a high influence on pharmacists' behavior. The results provided quantitative data by the examination of specific ethical issues and their occurrence. Further empirical research is recommended in order to systematically identify the ethical issues faced by community pharmacists.

What ethics for case managers? Literature review and discussion.

PubMed

Corvol, Aline; Moutel, Grégoire; Somme, Dominique

2016-11-01

Little is known about case managers' ethical issues and professional values. This article presents an overview of ethical issues in case managers' current practice. Findings are examined in the light of nursing ethics, social work ethics and principle-based biomedical ethics. A systematic literature review was performed to identify and analyse empirical studies concerning ethical issues in case management programmes. It was completed by systematic content analysis of case managers' national codes of ethics. Only nine empirical studies were identified, eight of them from North America. The main dilemmas were how to balance system goals against the client's interest and client protection against autonomy. Professional codes of ethics shared important similarities, but offered different responses to these two dilemmas. We discuss the respective roles of professional and organizational ethics. Further lines of research are suggested. © The Author(s) 2015.

Overall Assessment of Human Research and Ethics Committees in the United Arab Emirates.

PubMed

Abdulrahman, Mahera; Nair, Satish Chandrasekhar

2017-04-01

Growing demand for human health research in the United Arab Emirates (UAE) has prompted the need to develop a robust research ethics oversight. Examination of the structure, function, and practices of the human research ethics committees (HRECs), followed by evaluation of standards for measuring research output, was conducted. Results indicate that among the HRECs, 90% followed International Council for Harmonization-Good Clinical Practice guidelines, 66.6% have been in operation for more than 5 years, 95% reviewed proposals within 8 weeks, and 56% reviewed for scientific merit apart from ethics. However, systems to recognize accomplishments of researchers, funding transparency, and adverse event reporting were deployed in less than 30% of all HRECs. Research was incorporated into the vision and mission statements of many (65%) organizations. Research publications, collaborations, and recognitions were used to measure research output and report key performance indicators. In spite, resources to generate research output such as dedicated budget (20%), support staff (20%), and continuous training and mentoring program for medical residents (15%) and HREC members (25%) were somehow lacking. HREC structure and operations in the UAE are similar to other regions of the world. Systems to conduct research and report outcomes are defined in the UAE. Regulatory legislation and allocation of resources to support the clinical research enterprise will not only help to meet growing demand for clinical trials but also transform the quality of patient care in the UAE. It is anticipated that the results of this study will benefit investigators, regulators, pharmaceutical sponsors, and the policy makers in the region.

Ethical Guidance for Disaster Response, Specifically Around Crisis Standards of Care: A Systematic Review.

PubMed

Leider, Jonathon P; DeBruin, Debra; Reynolds, Nicole; Koch, Angelica; Seaberg, Judy

2017-09-01

Terrorism, disease outbreaks, and other natural disasters and mass casualty events have pushed health care and public health systems to identify and refine emergency preparedness protocols for disaster response. Ethical guidance, alongside legal and medical frameworks, are increasingly common components of disaster response plans. To systematically review the prevalence and content of ethical guidance offered for disaster response, specifically around crisis standards of care (CSCs). We systematically indexed academic literature from PubMed, Google Scholar, and ISI Web of Science from 2012 to 2016. We searched for peer-reviewed articles that substantively engaged in discussion of ethical guidance for CSCs. Researchers screened potential articles for identification and discussion of ethical issues in CSC planning. We categorized and cataloged ethical concepts and principles. Of 580 peer-reviewed articles mentioning ethics and CSCs or disaster planning, 38 (6%) met selection criteria. The systematic review of the CSC ethics literature since 2012 showed that authors were primarily focused on the ethical justifications for CSC (n = 20) as well as a need for ethics guidelines for implementing CSCs; the ethical justifications for triage (n = 19), both as to which criteria to use and the appropriate processes by which to employ triage; and international issues (n = 17). In addition to these areas of focus, the scholarly literature included discussion of a number of other ethical issues, including duty to care (n = 11), concepts of a duty to plan (n = 8), utilitarianism (n = 5), moral distress (n = 4), professional norms (n = 3), reciprocity (n = 2), allocation criteria (n = 4), equity (n = 4), research ethics (n = 2), duty to steward resources (n = 2), social utility and social worth (n = 2), and a number of others (n = 20). Although public health preparedness efforts have paid increasing attention to CSCs in recent years, CSC plans have rarely been implemented within the United States to date, although some components are common (e.g., triage is used in US emergency departments regularly). Conversely, countries outside the United States more commonly implement CSCs within a natural disaster or humanitarian crisis response, and may offer significant insight into ethics and disaster response for US-based practitioners. This systematic review identifies the most oft-used and -discussed ethical concepts and principles used in disaster planning around CSCs. Although discussion of more nuanced issues (e.g., health equity) are present, the majority of items substantively engaging in ethical discussion around disaster planning do so regarding triage and why ethics is needed in disaster response generally. Public health implications. A significant evolution in disaster planning has occurred within the past decade; ethical theories and frameworks have been put to work. For ethical guidance to be useful, it must be practical and implementable. Although high-level, abstract frameworks were once prevalent in disaster planning-especially in the early days of pandemic planning-concerns about the ethically difficult concept of CSCs pervade scholarly articles. Ethical norms must be clearly stated and justified and practical guidelines ought to follow from them. Ethical frameworks should guide clinical protocols, but this requires that ethical analysis clarifies what strategies to use to honor ethical commitments and achieve ethical objectives. Such implementation issues must be considered well ahead of a disaster. As governments and health care systems plan for mass casualty events, ethical guidance that is theoretically sound and practically useful can-and should-form an important foundation from which to build practical guidance for responding to disasters with morally appropriate means.

Ethics of clinical trials.

PubMed

Iyalomhe, G B S; Imomoh, P A

2007-01-01

Although clinical trials are conducted far more ethically and safer now than they were some decades ago, the elimination of gross abuses has tended to highlight more subtle ethical problems. Therefore, research in man, especially clinical drug trials, must now take into account ethical and legal requirements. This review examines the progress of clinical trial ethics, highlights the major ethical principles and challenges involved in the conduct of clinical trials, and suggests measures to ensure scientifically and ethically sound clinical trials. An internet search and a perusal of the literature on the history of clinical trials, medical ethics and good clinical practice, reveal that apart from laying a general principle, the Oath of Hippocrates did not provide a guide on the specific ethical problems involved in undertaking research, an important arm of advancement in medical knowledge. Hence, to avert continued ethical abuses of subjects during clinical research, the current reference guideliNe--the Helsinki Declaration of 1964 (revised in 1975), was adopted by the World Medical Assembly. It emphasized four major principles: autonomy, nonmaleficience, beneficence and justice. In applying these principles, the researcher must obtain a written free and well informed consent from patients who should be aware of their right to withdraw from trial at any moment. Where possible, a new drug should always first be compared to placebo in order to prove its superiority. He must ethically monitor and assess risks and benefits of the trial throughout its duration and use a fair procedure in selecting research subjects and must respect the concept of inviolability of the human person. Ethical challenges confronting clinical trials include the appropriateness of the proposed research, obtaining free informed consent, use of medications after completion of drug trials, drug toxicities and long-term side effects as well as the release and publication of research result. To improve protection for research subjects and have ethically sound clinical trials, there is need to adhere to global standards and legislations; establish, strengthen and empower regulatory bodies; develop partnership among stakeholders; intensify public enlightenment and train research personnel.

Ethical and Empirical Considerations in the Identification of Learning Disabilities

ERIC Educational Resources Information Center

Dombrowski, Stefan C.; Gischlar, Karen L.

2014-01-01

The authors encourage those in the field of school psychology to consider the use of learning disabilities assessment practices in relation to specific American Psychological Association and National Association of School Psychologists ethical codes and in regard to the American Educational Research Association, American Psychological Association,…

Taking up Faith: Ethical Methods for Studying Writing in Religious Contexts

ERIC Educational Resources Information Center

Pavia, Catherine Matthews

2015-01-01

Greater attention to methods and methodologies when studying writing in religious contexts is needed to help researchers navigate ethical issues specific to faith communities and religious practices; to improve knowledge regarding the relationships among writing, religion, and faith; and to encourage respect for religious and nonreligious beliefs.…

Ethical Approaches to Compliance

ERIC Educational Resources Information Center

Buzo, Carina

2017-01-01

This article explores the role that higher education has in ethical compliance to Title IX and the Clery Act. The discussion includes a curious look at common practices as potential future approaches to consent and sexual assault education. Articles and research are included to ground understanding in the current context, while examples from a…

Ethical Decision Making: What Is Currently the Case?

ERIC Educational Resources Information Center

Welfel, Elizabeth Reynolds; Lipsitz, Neal E.

This paper reviews the current empirical literature on counselor ethics, suggesting that it offers little guidance in understanding why unethical behavior occurs or how to remedy such behavior. The research literature is classified according to four basic areas of concern: (1) documenting the incidence of unethical practice; (2) identifying the…

In-World Behaviors and Learning in a Virtual World

ERIC Educational Resources Information Center

Nadolny, Larysa; Childs, Mark

2014-01-01

Educational virtual worlds can give students opportunities that would not otherwise be possible in face-to-face settings. The SciEthics Interactive simulations allow learners to conduct scientific research and practice ethical decision-making within a virtual world. This study examined the in-world behaviors that identify students who perceive…

Health research involving First Nations, Inuit and Métis children and their communities

PubMed Central

Starkes, Jill M; Baydala, Lola T

2014-01-01

Canadian and international guidelines address the ethical conduct of health research in general and the issues affecting Indigenous populations in particular. This statement summarizes, for clinicians and researchers, relevant ethical and practical considerations for health research involving Aboriginal children and youth. While not intended to duplicate findings arising from lengthy collaborative processes, it does highlight ‘wise practices’ that have successfully generated knowledge relevant to, respectful of and useful for Aboriginal children, youth and their communities. Further research on current health issues and inequities should lead to practical, effective and culturally relevant applications. Expanding our knowledge of ways to address the health disparities facing Canada’s Aboriginal children and youth can inform health policy and the provision of services. Community-based participatory research is proposed as a means to achieve this goal. PMID:24596485

Reflexive Research Ethics in Fetal Tissue Xenotransplantation Research

PubMed Central

Panikkar, Bindu; Smith, Natasha; Brown, Phil

2013-01-01

For biomedical research in which the only involvement of the human subject is the provision of tissue or organ samples, a blanket consent, i.e. consent to use the tissue for anything researchers wish to do, is considered by many to be adequate for legal and IRB requirements. Alternatively, a detailed informed consent provides patients or study participants with more thorough information about the research topic. We document here the beliefs and opinions of the research staff on informed consent and the discussion-based reflexive research ethics process that we employed in our fetal tissue xenotransplantion research on the impact of environmental exposures on fetal development. Reflexive research ethics entails the continued adjustment of research practice according to relational and reflexive understandings of what might be beneficent or harmful. Such reflexivity is not solely an individual endeavor, but rather a collective relationship between all actors in the research process. PMID:23074992

Piercing the veil: ethical issues in ethnographic research.

PubMed

Schrag, Brian

2009-06-01

It is not unusual for researchers in ethnography (and sometimes Institutional Review Boards) to assume that research of "public" behavior is morally unproblematic. I examine an historical case of ethnographic research and the sustained moral outrage to the research expressed by the subjects of that research. I suggest that the moral outrage was legitimate and articulate some of the ethical issues underlying that outrage. I argue that morally problematic Ethnographic research of public behavior can derive from research practice that includes a tendency to collapse the distinction between harm and moral wrong, a failure to take account of recent work on ethical issues in privacy; failure to appreciate the deception involved in ethnographers' failure to reveal their role as researchers to subjects and finally a failure to appropriately weigh the moral significance of issues of invasion of privacy and inflicted insight in both the research process and subsequent publication of research.

Nursing informatics and nursing ethics: addressing their disconnect through an enhanced TIGER-vision.

PubMed

Kaltoft, Mette Kjer

2013-01-01

All healthcare visions, including that of The TIGER (Technology-Informatics-Guiding-Educational-Reform) Initiative envisage a crucial role for nursing. However, its 7 descriptive pillars do not address the disconnect between Nursing Informatics and Nursing Ethics and their distinct communities in the clinical-disciplinary landscape. Each sees itself as providing decision support by way of information inputs and ethical insights, respectively. Both have reasons - ideological, professional, institutional - for their task construction, but this simultaneously disables each from engaging fully in the point-of-(care)-decision. Increased pressure for translating 'evidence-based' research findings into 'ethically-sound', 'value-based' and 'patient-centered' practice requires rethinking the model implicit in conventional knowledge translation and informatics practice in all disciplines, including nursing. The aim is to aid 'how nurses and other health care scientists more clearly identify clinical and other relevant data that can be captured to inform future comparative effectiveness research. 'A prescriptive, theory-based discipline of '(Nursing) Decisionics' expands the Grid for Volunteer Development of TIGER's newly launched virtual learning environment (VLE). This provides an enhanced TIGER-vision for educational reform to deliver ethically coherent, person-centered care transparently.

Attending to scalar ethical issues in emerging approaches to environmental health research and practice.

PubMed

Buse, Chris G; Smith, Maxwell; Silva, Diego S

2018-06-04

Accelerated changes to the planet have created novel spaces to re-imagine the boundaries and foci of environmental health research. Climate change, mass species extinction, ocean acidification, biogeochemical disturbance, and other emergent environmental issues have precipitated new population health perspectives, including, but not limited to, one health, ecohealth, and planetary health. These perspectives, while nuanced, all attempt to reconcile broad global challenges with localized health impacts by attending to the reciprocal relationships between the health of ecosystems, animals, and humans. While such innovation is to be encouraged, we argue that a more comprehensive engagement with the ethics of these emerging fields of inquiry will add value in terms of the significance and impact of associated interventions. In this contribution, we highlight how the concept of spatial and temporal scale can be usefully deployed to shed light on a variety of ethical issues common to emerging environmental health perspectives, and that the potential of scalar analysis implicit to van Potter's conceptualization of bioethics has yet to be fully appreciated. Specifically, we identify how scale interacts with key ethical issues that require consideration and clarification by one health, ecohealth, and planetary health researchers and practitioners to enhance the effectiveness of research and practice, including justice and governance.

A role for research ethics committees in exchanges of human biospecimens through material transfer agreements.

PubMed

Chalmers, Donald; Nicol, Dianne; Nicolás, Pilar; Zeps, Nikolajs

2014-09-01

International transfers of human biological material (biospecimens) and data are increasing, and commentators are starting to raise concerns about how donor wishes are protected in such circumstances. These exchanges are generally made under contractual material transfer agreements (MTAs). This paper asks what role, if any, should research ethics committees (RECs) play in ensuring legal and ethical conduct in such exchanges. It is recommended that RECs should play a more active role in the future development of best practice MTAs involving exchange of biospecimens and data and in monitoring compliance.

“Reality Surgery” — A Research Ethics Perspective on the Live Broadcast of Surgical Procedures

PubMed Central

Williams, Judson B.; Mathews, Robin; D'Amico, Thomas A.

2013-01-01

In recent years, the live broadcasting of medical and surgical procedures has gained worldwide popularity. While the practice has appropriately been met with concerns for patient safety and privacy, many physicians tout the merits of real time viewing as a form of investigation, accelerating the process leading to adoption or abolition of newer techniques or technologies. This view introduces a new series of ethical considerations that need to be addressed. As such, this article considers, from a research ethics perspective, the use of live surgical procedure broadcast for investigative purposes. PMID:21292217

Auto-driven Photo Elicitation Interviews in Research with Children: Ethical and Practical Considerations.

PubMed

Ford, Karen; Bray, Lucy; Water, Tineke; Dickinson, Annette; Arnott, Janine; Carter, Bernie

2017-06-01

Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children's experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children's participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews.

Applying a research ethics committee approach to a medical practice controversy: the case of the selective COX-2 inhibitor rofecoxib

PubMed Central

James, M; Cleland, L

2004-01-01

The new class of anti-inflammatory drugs, the COX-2 inhibitors, have been commercially successful to the point of market dominance within a short time of their launch. They attract a price premium on the basis that they are associated with fewer adverse gastric events than traditional anti-inflammatory drugs. This marketing continues even though a pivotal safety study with one of the COX-2 inhibitors, rofecoxib, showed a significant increase in myocardial infarction with rofecoxib use compared with a traditional anti-inflammatory drug. This finding has led to a series of publications containing pooled analyses of existing data that both support and refute the possibility of increased cardiovascular risk with COX-2 inhibitors. These medical journal publications have served to obfuscate rather than provide guidance for medical practitioners. Consideration of a research ethics committee approach to this issue suggests that it would deal with the controversy in a straightforward manner—namely, it would simply inform research participants of the trial results with rofecoxib. The certainty of this research ethics committee approach raises the issue of whether it should be applied in normal medical practice outside of the research environment. A consideration of the legal tests for disclosure of information suggests that therapeutic medical practice should mirror that within the research environment, in this case. PMID:15082814

The full spectrum of ethical issues in dementia care: systematic qualitative review.

PubMed

Strech, Daniel; Mertz, Marcel; Knüppel, Hannes; Neitzke, Gerald; Schmidhuber, Martina

2013-06-01

Integrating ethical issues in dementia-specific training material, clinical guidelines and national strategy plans requires an unbiased awareness of all the relevant ethical issues. To determine systematically and transparently the full spectrum of ethical issues in clinical dementia care. We conducted a systematic review in Medline (restricted to English and German literature published between 2000 and 2011) and Google books (with no restrictions). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in clinical dementia care. The literature review retrieved 92 references that together mentioned a spectrum of 56 ethical issues in clinical dementia care. The spectrum was structured into seven major categories that consist of first- and second-order categories for ethical issues. The systematically derived spectrum of ethical issues in clinical dementia care presented in this paper can be used as training material for healthcare professionals, students and the public for raising awareness and understanding of the complexity of ethical issues in dementia care. It can also be used to identify ethical issues that should be addressed in dementia-specific training programmes, national strategy plans and clinical practice guidelines. Further research should evaluate whether this new genre of systematic reviews can be applied to the identification of ethical issues in other cognitive and somatic diseases. Also, the practical challenges in addressing ethical issues in training material, guidelines and policies need to be evaluated.