Sample records for ethicists

  1. Synthetic Biology between Self-Regulation and Public Discourse: Ethical Issues and the Many Roles of the Ethicist.

    PubMed

    Arnason, Gardar

    2017-04-01

    This article discusses the roles of ethicists in the governance of synthetic biology. I am particularly concerned with the idea of self-regulation of bioscience and its relationship to public discourse about ethical issues in bioscience. I will look at the role of philosophical ethicists at different levels and loci, from the "embedded ethicist" in the laboratory or research project, to ethicists' impact on policy and public discourse. In a democratic society, the development of governance frameworks for emerging technologies, such as synthetic biology, needs to be guided by a well-informed public discourse. In the case of synthetic biology, the public discourse has to go further than merely considering technical issues of biosafety and biosecurity, or risk management, to consider more philosophical issues concerning the meaning and value of "life" between the natural and the synthetic. I argue that ethicists have moral expertise to bring to the public arena, which consists not only in guiding the debate but also in evaluating arguments and moral positions and making normative judgments. When ethicists make normative claims or moral judgments, they must be transparent about their theoretical positions and basic moral standpoints.

  2. [Animals and environmentalist ethics].

    PubMed

    Guichet, Jean-Luc

    2013-01-01

    While environmental ethics and animal ethics have a common source of inspiration, they do not agree on the question of the status of animals. Environmental ethicists criticise the narrowness of the reason, focused on pain, given by animal ethicists and their strictly individual point of view; they maintain that their ethical concept is less emotional and more informed by science, with a broad point of view taking natural networks into account. Animal ethicists respond critically, accusing the environmental ethicists of not having any ethical foundation. There are, however, prospects for reconciling the two approaches, provided that they recognise two different ethical stances for animals: one based on the integrity of wild animals and the other based on a model contract for tame animals.

  3. Ethics consultants and ethics committees.

    PubMed

    La Puma, J; Toulmin, S E

    1989-05-01

    To address moral questions in patient care, hospitals and health care systems have enlisted the help of hospital ethicists, ethics committees, and ethics consultation services. Most physicians have not been trained in the concepts, skills, or language of clinical ethics, and few ethicists have been trained in clinical medicine, so neither group can fully identify, analyze, and resolve clinical ethical problems. Some ethics committees have undertaken clinical consultations themselves, but liability concerns and variable standards for membership hinder their efforts. An ethics consultation service comprising both physician-ethicists and nonphysician-ethicists brings complementary viewpoints to the management of particular cases. If they are to be effective consultants, however, nonphysician-ethicists need to be "clinicians": professionals who understand an individual patient's medical condition and personal situation well enough to help in managing the case. Ethics consultants and ethics committees may work together, but they have separate identities and distinct objectives: ethics consultants are responsible for patient care, while ethics committees are administrative bodies whose primary task is to advise in creating institutional policy.

  4. Medical ethicists, human curiosities, and the new media midway.

    PubMed

    Miles, Steven H

    2004-01-01

    Medical ethicists have assumed a role in justifying public voyeurism of human "curiosities." This role has precedent in how scientists and natural philosophers once legitimized the marketing of museums of "human curiosities." At the beginning of the twentieth century, physicians dissociated themselves from entrepreneurial displays of persons with anomalies, and such commercial exhibits went into decline. Today, news media, principally on television, promote news features about persons that closely resemble the nineteenth century exhibits of human curiosities. Reporters solicit medical ethicists for soundbites to affirm the newsworthiness and propriety of public voyeurism of these medical stories. Ethicists' soundbites are usually ambiguous or self-evident and rarely enable viewers to morally engage the issues. The precedent of early twentieth century physicians disengaging from such exploitive public shows is a useful example for medical ethics.

  5. A Qualitative Exploration of a Clinical Ethicist's Role and Contributions During Family Meetings.

    PubMed

    Bruce, Courtenay R; Bibler, Trevor M; Pena, Adam M; Kusin, Betsy

    2016-12-01

    Despite the interpersonal nature of family meetings and the frequency in which they occur, the clinical ethics literature is devoid of any rich descriptions of what clinical ethicists should actually be doing during family meetings. Here, we propose a framework for describing and understanding "transitioning" facilitation skills based on a retrospective review of our internal documentation of 100 consecutive cases (June 01, 2013-December 31, 2014) wherein a clinical ethicist facilitated at least one family meeting. The internal documents were analyzed using qualitative methodologies, i.e., "codes", to identify emergent themes. We identified four different transitioning strategies clinical ethicists use to reach a meaningful resolution. These transitioning strategies serve as a jumping-off point for additional analyses, future research, evaluating clinical ethics consultation, and overall performance improvement of a consultation service.

  6. Environmental Studies and Utilitarian Ethics

    ERIC Educational Resources Information Center

    Wolff, Brian G.

    2008-01-01

    Environmental ethicists have focused much attention on the limits of utilitarianism and have generally defined "environmental ethics" in a manner that treats utilitarian environmental ethics as an oxymoron. This is unfortunate because utilitarian ethics can support strong environmental policies, and environmental ethicists have not yet produced a…

  7. Environmental Studies and Utilitarian Ethics

    ERIC Educational Resources Information Center

    Wolff, Brian G.

    2009-01-01

    Environmental ethicists have focused much attention on the limits of utilitarianism and have generally defined "environmental ethics" in a manner that treats utilitarian environmental ethics as an oxymoron. This is unfortunate because utilitarian ethics can support strong environmental policies, and environmental ethicists have not yet produced a…

  8. How Christian ethics became medical ethics: the case of Paul Ramsey.

    PubMed

    Hauerwas, Stanley

    1995-03-01

    Over the last century Christian ethics has moved from an attempt to Christianize the social order to a quandary over whether being Christian unduly biases how medical ethics is done. This movement can be viewed as the internal development of protestant liberalism to its logical conclusion, and Paul Ramsey can be taken as one of the last great representatives of that tradition. By reducing the Christian message to the 'ethical upshot' of neighbour love, Ramsey did not have the resources to show how Christian practice might make a difference for understanding or forming the practice of medicine. Instead, medicine became the practice that exemplified the moral commitments of Christian civilization, and the goal of the ethicist was to identify the values that were constitutive of medicine. Ramsey thus prepared the way for the Christian ethicist to become a medical ethicist with a difference, and the difference simply involved vague theological presumptions that do no serious intellectual work other than explaining, perhaps, the motivations of the ethicist.

  9. Efficacy of the nurse ethicist in reducing moral distress: what can the NHS learn from the USA? Part 2.

    PubMed

    Morley, Georgina

    In the second of two interrelated articles exploring the concept of moral distress, this article will discuss the efficacy of the nurse ethicist in reducing moral distress. The author will draw on the current literature and on her experiences while in the USA to discuss the ways in which moral distress is being addressed at the team/unit and institutional/organisational levels. It is argued that the nature of moral distress in the UK should be explored further, and that many of the tools used to mitigate moral distress in the USA, such as clinical ethics committees and healthcare ethics consultants, could be adopted more widely in the UK, both to reduce moral distress and to foster more ethical healthcare institutions. The role of the nurse ethicist could be pivotal in bridging the gap between organisational ethics and the individual moral values of bedside nurses. Ultimately, this article argues, the role of the nurse ethicist is worthy of replication in a UK context.

  10. Applying Applied Ethics through ethics consulting.

    PubMed

    Moore, W

    2010-04-01

    Applied Ethics is frequently described as a discipline of philosophy that concerns itself with the application of moral theories such as deontology and utilitarianism to real world dilemmas. However, these applications often remain restricted to the academic world. The focus of new versions ethics consulting has since the mid-1980s shifted from what the ethicist knows to what the ethicist does or enables. This shift remodelled the ethicist's role to that of a facilitator in an inherently social process of moral inquiry. Applying these developments in the Namibian context has already proved to be of great value to the local health care industry. (c) 2010. Published by Elsevier Ltd.

  11. Seeing through Medical Ethics: A Request for Professional Transparency and Accountability

    ERIC Educational Resources Information Center

    Connor, J. T. H.

    2016-01-01

    This essay is a critique of medical/clinical ethics from the personal perspective of a medical historian in an academic health science centre who has interacted with ethicists. It calls for greater transparency and accountability of ethicists involved in "bedside consulting"; it questions the wisdom of the four principles of biomedical…

  12. Normative ethics in sports medicine.

    PubMed

    Bernstein, Joseph; Perlis, Clifford; Bartolozzi, Arthur R

    2004-03-01

    The relationship between a team physician and an athlete differs significantly from the traditional doctor-patient relationship. To better define the ethical norms and ideals in sports medicine, we surveyed the views of practicing team physicians in the Ivy, National Football, and National Hockey Leagues and compared them with responses offered by professional ethicists. Six hypothetical cases were presented, each representing a distinct area of ethical conflict: advertising, conflicting healthcare goals, confidentiality, innovative treatments, enabling dangerous behavior, and treating children. Thirty-one ethicists and 131 team physicians responded to the surveys. Subjects were asked to rate agreement or disagreement with statements that followed the case description. Responses were converted to scores ranging from 0 to 100. A priori, a difference greater than 20 points was set to represent significant disagreement. By that standard, there was agreement between the physicians and ethicists for 18 of 23 statements. We concluded that team physicians and ethicists share many of the same ethical views on common ethical issues in sports medicine. The high degree of variance in the responses in both groups, however, suggests that many unresolved areas remain in the field of ethics in sports medicine.

  13. Empirical data and moral theory. A plea for integrated empirical ethics.

    PubMed

    Molewijk, Bert; Stiggelbout, Anne M; Otten, Wilma; Dupuis, Heleen M; Kievit, Job

    2004-01-01

    Ethicists differ considerably in their reasons for using empirical data. This paper presents a brief overview of four traditional approaches to the use of empirical data: "the prescriptive applied ethicists," "the theorists," "the critical applied ethicists," and "the particularists." The main aim of this paper is to introduce a fifth approach of more recent date (i.e. "integrated empirical ethics") and to offer some methodological directives for research in integrated empirical ethics. All five approaches are presented in a table for heuristic purposes. The table consists of eight columns: "view on distinction descriptive-prescriptive sciences," "location of moral authority," "central goal(s)," "types of normativity," "use of empirical data," "method," "interaction empirical data and moral theory," and "cooperation with descriptive sciences." Ethicists can use the table in order to identify their own approach. Reflection on these issues prior to starting research in empirical ethics should lead to harmonization of the different scientific disciplines and effective planning of the final research design. Integrated empirical ethics (IEE) refers to studies in which ethicists and descriptive scientists cooperate together continuously and intensively. Both disciplines try to integrate moral theory and empirical data in order to reach a normative conclusion with respect to a specific social practice. IEE is not wholly prescriptive or wholly descriptive since IEE assumes an interdepence between facts and values and between the empirical and the normative. The paper ends with three suggestions for consideration on some of the future challenges of integrated empirical ethics.

  14. Ethicist as designer: a pragmatic approach to ethics in the lab.

    PubMed

    van Wynsberghe, Aimee; Robbins, Scott

    2014-12-01

    Contemporary literature investigating the significant impact of technology on our lives leads many to conclude that ethics must be a part of the discussion at an earlier stage in the design process i.e., before a commercial product is developed and introduced. The problem, however, is the question regarding how ethics can be incorporated into an earlier stage of technological development and it is this question that we argue has not yet been answered adequately. There is no consensus amongst scholars as to the kind of ethics that should be practiced, nor the individual selected to perform this ethical analysis. One school of thought holds that ethics should have pragmatic value in research and design and that it should be implemented by the (computer) engineers and/or (computer) scientists themselves, while another school of thought holds that ethics need not be so pragmatic. For the latter, the ethical reflection can aim at a variety of goals, and be carried out by an ethicist. None of the approaches resulting from these lines of thinking have been adopted on a wide-scale basis. To that end, the approach presented here is intended to bridge the gap between these schools of thought. It is our contention that ethics ought to be pragmatic and to provide utility for the design process and we maintain that adequate ethical reflection, and all that it entails, ought to be conducted by an ethicist. Thus, we propose a novel role for the ethicist--the ethicist as designer--who subscribes to a pragmatic view of ethics in order to bring ethics into the research and design of artifacts-no matter the stage of development. In this paper we outline the series of steps that a pragmatic value analysis entails: uncovering relevant values, scrutinizing these values and, working towards the translation of values into technical content. In conclusion, we present a list of tasks for the ethicist in his/her role as designer on the interdisciplinary team.

  15. 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.

  16. Attributing Agency to Automated Systems: Reflections on Human-Robot Collaborations and Responsibility-Loci.

    PubMed

    Nyholm, Sven

    2017-07-18

    Many ethicists writing about automated systems (e.g. self-driving cars and autonomous weapons systems) attribute agency to these systems. Not only that; they seemingly attribute an autonomous or independent form of agency to these machines. This leads some ethicists to worry about responsibility-gaps and retribution-gaps in cases where automated systems harm or kill human beings. In this paper, I consider what sorts of agency it makes sense to attribute to most current forms of automated systems, in particular automated cars and military robots. I argue that whereas it indeed makes sense to attribute different forms of fairly sophisticated agency to these machines, we ought not to regard them as acting on their own, independently of any human beings. Rather, the right way to understand the agency exercised by these machines is in terms of human-robot collaborations, where the humans involved initiate, supervise, and manage the agency of their robotic collaborators. This means, I argue, that there is much less room for justified worries about responsibility-gaps and retribution-gaps than many ethicists think.

  17. Minding the gap between logic and intuition: an interpretative approach to ethical analysis.

    PubMed

    Kirklin, D

    2007-07-01

    In an attempt to be rational and objective, and, possibly, to avoid the charge of moral relativism, ethicists seek to categorise and characterise ethical dilemmas. This approach is intended to minimise the effect of the confusing individuality of the context within which ethically challenging problems exist. Despite and I argue partly as a result of this attempt to be rational and objective, even when the logic of the argument is accepted--for example, by healthcare professionals--those same professionals might well respond by stating that the conclusions are unacceptable to them. In this paper, I argue that an interpretative approach to ethical analysis, involving an examination of the ways in which ethical arguments are constructed and shared, can help ethicists to understand the origins of this gap between logic and intuition. I suggest that an argument will be persuasive either if the values underpinning the proposed argument accord with the reader's values and worldview, or if the argument succeeds in persuading the reader to alter these. A failure either to appreciate or to acknowledge those things that give meaning to the lives of all the interested parties will make this objective far harder, if not impossible, to achieve. If, as a consequence, the narratives ethicists use to make their arguments seem to be about people living in different circumstances, and faced with different choices and challenges, from those the readers or listeners consider important or have to face in their own lives, then the argument is unlikely to seem either relevant or applicable to those people. The conclusion offered by the ethicist will be, for that individual, counterintuitive. Abortion, euthanasia and cadaveric organ donation are used as examples to support my argument.

  18. Minding the gap between logic and intuition: an interpretative approach to ethical analysis

    PubMed Central

    Kirklin, D

    2007-01-01

    In an attempt to be rational and objective, and, possibly, to avoid the charge of moral relativism, ethicists seek to categorise and characterise ethical dilemmas. This approach is intended to minimise the effect of the confusing individuality of the context within which ethically challenging problems exist. Despite and I argue partly as a result of this attempt to be rational and objective, even when the logic of the argument is accepted—for example, by healthcare professionals—those same professionals might well respond by stating that the conclusions are unacceptable to them. In this paper, I argue that an interpretative approach to ethical analysis, involving an examination of the ways in which ethical arguments are constructed and shared, can help ethicists to understand the origins of this gap between logic and intuition. I suggest that an argument will be persuasive either if the values underpinning the proposed argument accord with the reader's values and worldview, or if the argument succeeds in persuading the reader to alter these. A failure either to appreciate or to acknowledge those things that give meaning to the lives of all the interested parties will make this objective far harder, if not impossible, to achieve. If, as a consequence, the narratives ethicists use to make their arguments seem to be about people living in different circumstances, and faced with different choices and challenges, from those the readers or listeners consider important or have to face in their own lives, then the argument is unlikely to seem either relevant or applicable to those people. The conclusion offered by the ethicist will be, for that individual, counterintuitive. Abortion, euthanasia and cadaveric organ donation are used as examples to support my argument. PMID:17601864

  19. Attitudes of belgian students of medicine, philosophy, and law toward euthanasia and the conditions for its acceptance.

    PubMed

    Roelands, Marc; Van den Block, Lieve; Geurts, Sylvie; Deliens, Luc; Cohen, Joachim

    2015-01-01

    Euthanasia is legal in Belgium if due care criteria are met, which is judged by committees including physicians, ethicists, and jurists. We examined whether students in these disciplines differ in how they judge euthanasia as an acceptable act. A cross-sectional, anonymous e-mail survey revealed that they have similar attitudes and accept its legalization. Therefore, joint decision-making of physicians, ethicists, and lawyers regarding euthanasia seems to have a common attitudinal base in Belgium. However, they differ to some extent regarding the conditions they put forward for euthanasia being acceptable. Philosophy of life (religion) was an independent predictor of these attitudes.

  20. Lifting the veil: a typological survey of the methodological features of Islamic ethical reasoning on biomedical issues.

    PubMed

    Abdur-Rashid, Khalil; Furber, Steven Woodward; Abdul-Basser, Taha

    2013-04-01

    We survey the meta-ethical tools and institutional processes that traditional Islamic ethicists apply when deliberating on bioethical issues. We present a typology of these methodological elements, giving particular attention to the meta-ethical techniques and devices that traditional Islamic ethicists employ in the absence of decisive or univocal authoritative texts or in the absence of established transmitted cases. In describing how traditional Islamic ethicists work, we demonstrate that these experts possess a variety of discursive tools. We find that the ethical responsa-i.e., the products of the application of the tools that we describe-are generally characterized by internal consistency. We also conclude that Islamic ethical reasoning on bioethical issues, while clearly scripture-based, is also characterized by strong consequentialist elements and possesses clear principles-based characteristics. The paper contributes to the study of bioethics by familiarizing non-specialists in Islamic ethics with the role, scope, and applicability of key Islamic ethical concepts, such as "aims" (maqāṣid), "universals" (kulliyyāt), "interest" (maṣlaḥa), "maxims" (qawā`id), "controls" (ḍawābit), "differentiators" (furūq), "preponderization" (tarjīḥ), and "extension" (tafrī`).

  1. [Bioethics in medical institutions--new custom or help? The example of clinical ethics consultation at a University Medical Center].

    PubMed

    Richter, G

    2014-08-01

    Although ethics committees are well established in the medical sciences for human clinical trials, animal research and scientific integrity, the development of clinical ethics in German hospitals started much later during the first decade of the twenty-first century. Clinical ethics consultation should be pragmatic and problem-centered and can be defined as an ethically qualified and informed conflict management within a given legal framework to deal with and resolve value-driven, normative problems in the care of patients. Clinical ethics consultations enable shared clinical decision-making of all parties (e.g. clinicians, patients, family and surrogates) involved in a particular patient's care. The clinical ethicist does not act as an ethics expert by making independent recommendations or decisions; therefore, the focus is different from other medical consultants. Ethics consultation was first established by healthcare ethics committees (HEC) or clinical ethics consultation (CEC) groups which were called in to respond to an ethically problematic situation. To avoid ethical dilemmas or crises and to act preventively with regard to ethical issues in individual patients, an ethics liaison service is an additional option to ethics case consultations which take place on a regular basis by scheduled ethics rounds during the normal ward rounds. The presence of the ethicist offers some unique advantages: it allows early recognition of even minor ethical problems and accommodates the dynamics of ethical and clinical goal-setting in the course of patient care. Most importantly, regular and non-authoritative participation of the ethicist in normal ward rounds allows continuous ethical education of the staff within the everyday clinical routine. By facilitating clinical ethical decision-making, the ethicist seeks to empower physicians and medical staff to deal appropriately with ethical problems by themselves. Because of this proactive approach, the ethics liaison service can make a significant contribution to preventative ethics in reducing the number of emerging ethical problems to the satisfaction of all parties involved.

  2. The Reciprocal Links between Evolutionary-Ecological Sciences and Environmental Ethics.

    ERIC Educational Resources Information Center

    Rozzi, Ricardo

    1999-01-01

    Illustrates the reciprocal relationships between the sciences and environmental ethics by examining the Darwinian theory of evolution and discussing its implications for ecologists and ethicists. (CCM)

  3. Ethics and experts.

    PubMed

    Noble, C N

    1982-06-01

    Cheryl Noble discusses the emergence of applied ethics as a subdiscipline and expresses skepticism about the role of the philosopher as a technical "expert" on social problems. Peter Singer applauds the renewed interest of philosophers in social issues and points out the special advantages they may contribute to discussions of such issues. Jerry Avorn, a physician, sees a useful role for ethicists as teachers and resources for medical practitioners trained as generalists responsible for a patient's care. Daniel Wikler accepts Noble's contention that ethicists are in danger of becoming defenders of conventional morality but argues that applied analytic philosophy has contributed logical precision and vigor of argument on a number of pressing social issues. Tom Beauchamp also acknowledges validity in some of Noble's criticisms while analyzing a variety of weaknesses in her arguments.

  4. Dialogical nursing ethics: the quality of freedom restrictions.

    PubMed

    Abma, Tineke A; Widdershoven, Guy A M; Frederiks, Brenda J M; van Hooren, Rob H; van Wijmen, Frans; Curfs, Paul L M G

    2008-11-01

    This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.

  5. Curbside consultation re-imagined: Borrowing from the conflict management toolkit.

    PubMed

    Edelstein, Lauren M; Lynch, John J; Mokwunye, Nneka O; DeRenzo, Evan G

    2010-03-01

    Curbside ethics consultations occur when an ethics consultant provides guidance to a party who seeks assistance over ethical concerns in a case, without the consultant involving other stakeholders, conducting his or her own comprehensive review of the case, or writing a chart note. Some have argued that curbside consultation is problematic because the consultant, in focusing on a single narrative offered by the party seeking advice, necessarily fails to account for the full range of moral perspectives. Their concern is that any guidance offered by the ethics consultant will privilege and empower one party's viewpoint over-and to the exclusion of-other stakeholders. This could lead to serious harms, such as the ethicist being reduced to a means to an end for a clinician seeking to achieve his or her own preferred outcome, the ethicist denying the broader array of stakeholders input in the process, or the ethicist providing wrongheaded or biased advice, posing dangers to the ethical quality of decision-making. Although these concerns are important and must be addressed, we suggest that they are manageable. This paper proposes using conflict coaching, a practice developed within the discipline of conflict management, to mitigate the risks posed by curbside consultation, and thereby create new "spaces" for moral discourse in the care of patients. Thinking of curbside consultations as an opportunity for "clinical ethics conflict coaching" can more fully integrate ethics committee members into the daily ethics of patient care and reduce the frequency of ethically harmful outcomes.

  6. What's the matter with business ethics?

    PubMed

    Stark, A

    1993-01-01

    The more business ethics secures its status in campuses across the country, the more bewildering it appears to actual managers. It's not that managers dislike the idea of doing the right thing. As University of Toronto Assistant Professor Andrew Stark argues, far too many business ethicists just haven't offered them the practical advice they need. Before business ethics became a formal discipline, advocates of corporate social responsibility claimed that the market would ultimately reward ethical behavior. But ethics and interests did not always intersect so fruitfully in the real world. And when they did not, managers were left in the dark to grope for the right ethical course. In the 1970s, the brand-new field of business ethics came onto the scene to address this issue. Critical of the "ethics pays" approach, academics held that ethics and interests can and do conflict. Still, scholars took an equally unrealistic line. To them, a manager's motivation could be either altruistic or self-interested, but never both. In short, ethicists still weren't addressing the difficult moral dilemmas that managers face on a day-to-day basis, and only recently have they begun to do so. After some initial stumbles, ethicists are getting their hands dirty and seriously considering the costs of doing the right thing. Finally, a new business ethics is emerging that acknowledges and accepts the messy world of mixed motives. As a result, novel concepts are springing up: moderation, pragmatism, minimalism, among others.(ABSTRACT TRUNCATED AT 250 WORDS)

  7. 78 FR 69426 - Submission for OMB Review; 30-Day Comment Request: NIH NCI Central Institutional Review Board...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-11-19

    ... includes oncology physicians, surgeons, nurses, patient advocates, ethicists, statisticians, pharmacists... Pharmacist's Review of a Cooperative Board Members 10 1 2 20 Group Study. Pediatric Pharmacist's Review of a...

  8. Balancing theory and practicality: engaging non-ethicists in ethical decision making related to radiological protection.

    PubMed

    Martinez, Nicole; Wueste, Daniel

    2016-12-01

    This paper discusses an approach for engaging radiation protection professionals in the ethical aspects of decision-making, with discussion on how this approach fits in with the existing system of radiological protection. It explores finding common ground between ethical and scientific theory, how to present relevant moral theory in accessible language, and provides a practical framework for dealing with real-world problems. Although establishing the ethical theory behind the system of radiological protection is an important ongoing endeavour within the community, it is equally important to communicate this information in a way that is useful to non-ethicists. Discussion of both ethical theory and a useful strategy for applying the theory makes ethics more accessible to those working in the field by providing them with the knowledge and confidence to apply ethical principles in decisions and practice.

  9. Philosophy of Healthcare Ethics Practice Statements: Quality Attestation and Beyond.

    PubMed

    Notini, Lauren

    2018-06-13

    One element of the American Society for Bioethics and Humanities' recently-piloted quality attestation portfolio for clinical ethics consultants is a "philosophy of clinical ethics consultation statement" describing the candidate's approach to clinical ethics consultation. To date, these statements have been under-explored in the literature, in contrast to philosophy statements in other fields such as academic teaching. In this article, I argue there is merit in expanding the content of these statements beyond clinical ethics consultation alone to describe the author's approach to other important "domains" of healthcare ethics practice (e.g., organizational policy development/review and ethics teaching). I also claim such statements have at least three additional uses outside quality attestation: (1) as a reflective practice learning tool to increase role clarity among practicing healthcare ethicists and bioethics fellows; (2) assisting practicing healthcare ethicists in clarifying role expectations with those they work with; and (3) helping inform developing professional practice standards.

  10. [Ethic rounds in intensive care. Possible instrument for a clinical-ethical assessment in intensive care units].

    PubMed

    Scheffold, N; Paoli, A; Gross, J; Riemann, U; Hennersdorf, M

    2012-10-01

    Ethical problems, such as medical end-of-life decisions or withdrawing life-sustaining treatment are viewed as an essential task in intensive care units. This article presents the ethics rounds as an instrument for evaluation of ethical problems in intensive care medicine units. The benchmarks of ethical reflection during the ethics rounds are considerations of ethical theory of principle-oriented medical ethics. Besides organizational aspects and the institutional framework, the role of the ethicist is described. The essential evaluation steps, as a basis of the ethics rounds are presented. In contrast to the clinical ethics consultation, the ethicist in the ethics rounds model is integrated as a member of the ward round team. Therefore ethical problems may be identified and analyzed very early before the conflict escalates. This preventive strategy makes the ethics rounds a helpful instrument in intensive care units.

  11. The ethics and economics of pharmaceutical pricing.

    PubMed

    Parker-Lue, Sara; Santoro, Michael; Koski, Greg

    2015-01-01

    The cost of drugs is a major and rapidly rising component of health-care expenditures. We survey recent literature on the ethics and economics of skyrocketing pharmaceutical prices and find that advances in economic research have increased the sharpness and focus of the ethically based calls to increase access by modifying patent protection and reducing prices. In some cases, research supports ethical arguments for broader access. Other research suggests that efforts to broaden access result in unintended consequences for innovation and the medical needs of patients. Both ethicists and economists need to be more cognizant of the real clinical settings in which physicians practice medicine with real patients. Greater cross-disciplinary interaction among economists, ethicists, and physicians can help reduce the disjunction between innovation and access and improve access and patient care. This dialogue will impact private industry and may spur new multistakeholder paradigms for drug discovery, development, and pricing.

  12. Health Disparities among LGBT Older Adults and the Role of Nonconscious Bias.

    PubMed

    Foglia, Mary Beth; Fredriksen-Goldsen, Karen I

    2014-09-01

    This paper describes the significance of key empirical findings from the recent and landmark study Caring and Aging with Pride: The National Health, Aging and Sexuality Study (with Karen I. Fredriksen-Goldsen as the principal investigator), on lesbian, gay, bisexual, and transgender aging and health disparities. We will illustrate these findings with select quotations from study participants and show how nonconscious bias (i.e., activation of negative stereotypes outside conscious awareness) in the clinical encounter and health care setting can threaten shared decision-making and perpetuate health disparities among LGBT older adults. We recognize that clinical ethicists are not immune from nonconscious bias but maintain that they are well situated to recognize bias and resulting injustice by virtue of their training. Further, we discuss how clinical ethicists can influence the organization's ethical culture and environment to improve the quality and acceptability of health care for LGBT older adults. © 2014 by The Hastings Center.

  13. Academic freedom and the professional responsibilities of applied ethicists: a comment on Minerva.

    PubMed

    Dawson, Angus; Herington, Jonathan

    2014-05-01

    Academic freedom is an important good, but it comes with several responsibilities. In this commentary we seek to do two things. First, we argue against Francesca Minerva's view of academic freedom as presented in her article 'New threats to academic freedom' on a number of grounds. We reject the nature of the absolutist moral claim to free speech for academics implicit in the article; we reject the elitist role for academics as truth-seekers explicit in her view; and we reject a possible more moderate re-construction of her view based on the harm/offence distinction. Second, we identify some of the responsibilities of applied ethicists, and illustrate how they recommend against allowing for anonymous publication of research. Such a proposal points to the wider perils of a public discourse which eschews the calm and careful discussion of ideas. © 2014 John Wiley & Sons Ltd.

  14. Job-based health insurance. Who has the duty to lead?

    PubMed

    Callahan, D

    2000-01-01

    A noted medical ethicist argues that only the business community has the collective power and resources to create a "sustainable medicine" for the nation's health care. But will employers have sufficient incentive and motivation to do so?

  15. Competency Model 101. The Process of Developing Core Competencies.

    ERIC Educational Resources Information Center

    Eichelberger, Lisa Wright; Hewlett, Peggy O'Neill

    1999-01-01

    The Mississippi Competency Model defines nurses' roles as provider (caregiver, teacher, counselor, advocate), professional (scholar, collaborator, ethicist, researcher), and manager (leader, facilitator, intrapreneur, decision maker, technology user) for four levels of nursing: licensed practical nurse, associate degree, bachelor's degree, and…

  16. Some Basics about Ethics.

    ERIC Educational Resources Information Center

    Dean, Peter J.

    1994-01-01

    Discussion of ethics focuses on the role of human performance technology professionals in helping corporate ethicists. Highlights include definitions of ethics, morals, values, and business ethics; ethics in academia and in business; and application of the knowledge of ethics to decision-making. (Contains 18 references.) (LRW)

  17. Professional Prerogatives: Perspectives of an Ethicist.

    ERIC Educational Resources Information Center

    Veatch, Robert M.

    1991-01-01

    Observations on ethics in pharmacy practice address the growing professionalization of pharmacy, change in professional prerogative, conflict within the medical professions, conflict with factors outside medicine, patient-centered vs. socially centered pharmacy, patient benefits vs. patient rights, different concepts of ethics, and what the future…

  18. Women and AIDS: the ethics of exaggerated harm.

    PubMed

    Mertz, David; Sushinsky, Mary Ann; Schüklenk, Udo

    1996-04-01

    This article examines the way in which some biomedical ethicists have constructed sexually transmitted AIDS as a significant threat to women's health. We demonstrate that the familiar claim that 'women are the fastest growing group' -- whether of HIV-infected or of AIDS patients -- is misleading because it obscures the distinction between proportional rate of growth and absolute increase. Feminist ethicists have suggested that misogyny of a male dominated health care system has led to underreporting of women AIDS cases in order to support these feminists' claim of AIDS being a real threat to women's health. Given the apparent rarity of tertiary transmissions of AIDS, the assertion that most or even many women are at significant risk for AIDS seems wrong. Particularly disturbing in this campaign is the fact that the theme of 'risky sex' has been extended all the way to lesbians, even though their risk to acquire AIDS sexually is non-existent to miniscule. We argue that actual harm is done to women by this exaggeration of their risk of contracting AIDS sexually. The scare has led to misappropriations of scarce health care funds. AIDS disproportionately affects women who inject drugs, and who suffer other diseases, poverty and malnutrition. It would have been better to concentrate health care efforts in this area instead of 'educating' women not at risk for AIDS how to prevent the acquisition of this disease. Unjustifiable AIDS anxiety has been created in women and has resulted in millions of unnecessary HIV-tests, and many broken relationships. This anxiety has inevitably reduced the pleasure of having sex for many women. We reject the kind of 'victim ideology' that lies at the heart of this strategy which has, unfortunately, been supported by a number of influential feminist ethicists.

  19. Ethics and Research with Undergraduates

    ERIC Educational Resources Information Center

    Richman, Kenneth A.; Alexander, Leslie B.

    2006-01-01

    Ethicists, researchers and policy makers have paid increasing attention to the ethical conduct of research, especially research involving human beings. Research performed with and by undergraduates poses a specific set of ethical challenges. These challenges are often overlooked by the research community because it is assumed that undergraduate…

  20. Teaching Medical Ethics: Some Persistent Questions and Some Responses.

    ERIC Educational Resources Information Center

    Pellegrino, Edmund D.

    1989-01-01

    Issues in the inclusion of medical ethics in the medical curriculum are discussed, including its relevance, whether or not ethics can be taught, whose ethics should be taught, the contribution of the professional ethicist, and the relevance of humanistic studies outside ethics. (MSE)

  1. A Lay Ethics Quest for Technological Futures: About Tradition, Narrative and Decision-Making.

    PubMed

    van der Burg, Simone

    2016-01-01

    Making better choices about future technologies that are being researched or developed is an important motivator behind lay ethics interventions. However, in practice, they do not always succeed to serve that goal. Especially authors who have noted that lay ethicists sometimes take recourse to well-known themes which stem from old, even 'archetypical' stories, have been criticized for making too little room for agency and decision-making in their approach. This paper aims to contribute to a reflection on how lay ethics can acquire more practical relevance. It will use resources in narrative ethics to suggest that in order to be relevant for action, facilitators of lay ethics interventions need to invite participants to engage in a narrative quest. As part of a quest, lay ethicists should be asked to (1) reflect on a specific question or choice, (2) use diverse (imaginative) input which is informative about the heterogeneity of viewpoints that are defended in society and (3) argue for their standpoints.

  2. Activities of an ethics consultation service in a Tertiary Military Medical Center.

    PubMed

    Waisel, D B; Vanscoy, S E; Tice, L H; Bulger, K L; Schmelz, J O; Perucca, P J

    2000-07-01

    The Joint Commission on Accreditation of Healthcare Organizations requires hospitals to have a mechanism to address issues of medical ethics. Most hospitals, especially those in the military, have an ethics committee composed solely of members who serve as an additional duty. To enhance the ethics consultation service, the 59th Medical Wing created a position under the chief of the medical staff for a full-time, fellowship-trained, medical ethicist. After establishment of this position, the number of consultations increased, a systematic program for caregiver education was developed and delivered, and an organizational presence was achieved by instituting positions on the institutional review board, the executive committee of the medical staff, and the credentials committee. Issues in medical care are becoming increasingly complicated, due in large part to financial stresses and technological advancements. Ethics consultation can help prevent and resolve many of these problems. This report discusses the activities of the first year of a full-time ethicist in a tertiary military medical center.

  3. Scepticism about the virtue ethics approach to nursing ethics.

    PubMed

    Holland, Stephen

    2010-07-01

    Nursing ethics centres on how nurses ought to respond to the moral situations that arise in their professional contexts. Nursing ethicists invoke normative approaches from moral philosophy. Specifically, it is increasingly common for nursing ethicists to apply virtue ethics to moral problems encountered by nurses. The point of this article is to argue for scepticism about this approach. First, the research question is motivated by showing that requirements on nurses such as to be kind, do not suffice to establish virtue ethics in nursing because normative rivals (such as utilitarians) can say as much; and the teleology distinctive of virtue ethics does not transpose to a professional context, such as nursing. Next, scepticism is argued for by responding to various attempts to secure a role for virtue ethics in nursing. The upshot is that virtue ethics is best left where it belongs - in personal moral life, not professional ethics - and nursing ethics is best done by taking other approaches.

  4. 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.

  5. 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.

  6. Policy Implications of Using Genomic Medicine in the Air Force Medical Service

    DTIC Science & Technology

    2011-02-16

    Legal Pragmatism‖ Mark Rothstein, an ethicist with the Institute for Bioethics , Health Policy and Law at the University of Louisville School of...Light: Professional Society Guidelines Begin the Ethical Conversations about Screening.‖ American Journal of Bioethics 9, no. 4 (2009): 17-19.

  7. Ethics of Gene Therapy Debated.

    ERIC Educational Resources Information Center

    Borman, Stu

    1991-01-01

    Presented are the highlights of a press conference featuring biomedical ethicist LeRoy Walters of Georgetown University and attorney Andrew Kimbrell of the Foundation on Economic Trends. The opposing points of view of these two speakers serve to outline the pros and cons of the gene therapy issue. (CW)

  8. Children as Ethicists: Stories for Thoughtful Young Citizens

    ERIC Educational Resources Information Center

    Bratt, Kirstin Ruth

    2010-01-01

    An emphasis on diversity is one of the greatest challenges in my teaching. Everyone, myself included, enters the course with a set of expectations for human behavior, and literature can be very disruptive of these expectations. International literature, for example, often disrupts the narrative expectations of readers who were trained by stories…

  9. "Let Freedom Ring!" Black Women's Spirituality Shaping Prophetic Christian Education

    ERIC Educational Resources Information Center

    Smith, Yolanda Y.

    2012-01-01

    The author believes that a deep sense of spirituality together with effective Christian education can be a powerful resource for equipping individuals and communities to play an active role in transforming their lives as well as oppressive systems that have impacted their communities. In her discussion of spirituality, womanist ethicist Emilie…

  10. Moral Attention: A Comparative Philosophical Study

    ERIC Educational Resources Information Center

    Gendron, Claude

    2016-01-01

    The notion of moral attention allows the recognition of fundamental aspects of ethical life ignored or neglected by mainstream ethical theories. It is central to the theories of several notable female ethicists and many of them identify the French philosopher Simone Weil as the source of the contemporary use of this concept which invites…

  11. Stories and the Development of Virtue

    ERIC Educational Resources Information Center

    Willows, Adam M.

    2017-01-01

    From folk tales to movies, stories possess features which naturally suit them to contribute to the growth of virtue. In this article I show that the fictional exemplars help the learner to grasp the moral importance of internal states and resolves a tension between existing kinds of exemplars discussed by virtue ethicists. Stories also increase…

  12. Teaching Ethics Means Practicing Ethics: When a Student Says His Company Is Breaking the Law.

    ERIC Educational Resources Information Center

    McCormick, Donald W.; Fleming, John

    1990-01-01

    A case in which a business student claimed, in class, that his employer was acting unethically is commented on by a business ethicist, focusing on issues of moral and legal obligation, student confidentiality, and classroom trust faced by the faculty member. The teacher's multiple responsibilities are emphasized. (MSE)

  13. In Search of a Pedagogy for Character, Competence, and Fitness in Ethics Training for Graduate Psychology

    ERIC Educational Resources Information Center

    Wall, Thomas

    2010-01-01

    Melba Vasquez (1992), educator, and ethicist, and the President Elect of the American Psychological Association wrote, "Professionals concerned with the problems of unethical behavior believe that the strongest weapon against professional misconduct may be the education of trainees" (p. 196). It is this statement, my professional…

  14. (The Ethics of) Teaching Science and Ethics: A Collaborative Proposal.

    PubMed

    Kabasenche, William P

    2014-12-01

    I offer a normative argument for a collaborative approach to teaching ethical issues in the sciences. Teaching science ethics requires expertise in at least two knowledge domains-the relevant science(s) and philosophical ethics. Accomplishing the aims of ethics education, while ensuring that science ethics discussions remain grounded in the best empirical science, can generally best be done through collaboration between a scientist and an ethicist. Ethics as a discipline is in danger of being misrepresented or distorted if presented by someone who lacks appropriate disciplinary training and experience. While there are exceptions, I take philosophy to be the most appropriate disciplinary domain in which to gain training in ethics teaching. Science students, who must be prepared to engage with many science ethics issues, are poorly served if their education includes a misrepresentation of ethics or specific issues. Students are less well prepared to engage specific issues in science ethics if they lack an appreciation of the resources the discipline of ethics provides. My collaborative proposal looks at a variety of ways scientists and ethicists might collaborate in the classroom to foster good science ethics education.

  15. Concepts of animal welfare in relation to positions in animal ethics.

    PubMed

    Schmidt, Kirsten

    2011-06-01

    When animal ethicists deal with welfare they seem to face a dilemma: On the one hand, they recognize the necessity of welfare concepts for their ethical approaches. On the other hand, many animal ethicists do not want to be considered reformist welfarists. Moreover, animal welfare scientists may feel pressed by moral demands for a fundamental change in our attitude towards animals. The analysis of this conflict from the perspective of animal ethics shows that animal welfare science and animal ethics highly depend on each other. Welfare concepts are indispensable in the whole field of animal ethics. Evidence for this can be found by analyzing the structure of theories of animal ethics and the different ways in which these theories employ welfare concepts. Furthermore, the background of values underneath every welfare theory is essential to pursue animal welfare science. Animal ethics can make important contributions to the clarification of underlying normative assumptions with regard to the value of the animal, with regard to ideas about what is valuable for the animal, and with regard to the actions that should follow from the results of animal welfare science.

  16. Why Are There So Few Ethics Consults in Children's Hospitals?

    PubMed

    Carter, Brian; Brockman, Manuel; Garrett, Jeremy; Knackstedt, Angie; Lantos, John

    2018-06-01

    In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children's hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are (1) ethics committee meetings, (2) Nursing Ethics Forum, (3) ethics Brown Bag workshops, (4) PICU ethics rounds, (5) Grand Rounds, (6) NICU Comprehensive Care Rounds, (7) Palliative Care Team (PaCT) case conferences, (8) multidisciplinary consults in Fetal Health Center, and (9) ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of "core competencies" than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple "moral spaces" in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today.

  17. Lifelong Learning in Ethical Practice: A Challenge for Continuing Medical Education.

    ERIC Educational Resources Information Center

    Kenny, Nuala; Sargeant, Joan; Allen, Michael

    2001-01-01

    Questionnaires and small-group discussions with a physician-ethicist revealed that physicians had very little formal ethics training in medical school. They did not feel they needed a very high level of confidence regarding ethical issues in practice, but lacked a systematic approach to identification and analysis of ethical issues. (Contains 24…

  18. [Albert Schweitzer and psychoanalysis].

    PubMed

    Noth, Isabelle

    2009-01-01

    The correspondence between Albert Schweitzer and Oskar Pfister, published in 2006, reveals Schweitzer's strong interest in psychoanalysis. That Schweitzer, ethicist, theologian and missionary doctor, would show such appreciation for psychoanalysis to which the Zurich pastor had introduced him is not immediately self-evident. This article indicates three points of congruence which may explain the connectivity between Schweitzer's thinking and psychoanalysis.

  19. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care.

    ERIC Educational Resources Information Center

    American Association of Colleges of Nursing, Washington, DC.

    A group of health care ethicists and palliative care experts convened by the American Association of Colleges of Nursing developed a set of competencies that should be achieved through nursing curricula. The purpose of the 15 competency statements is to assist nurse educators in incorporating end-of-life content into nursing curricula. Every…

  20. My life as a dentist and ethicist: an experiment in creative nonfiction.

    PubMed

    Quick, K K

    2011-01-01

    In a certain sense, we become the synthesis of our life experiences, and our professional identity is woven into a personal life story. A dentist with a PhD in Health Services Research and Policy who teaches clinical dentistry and ethics reflects on some of the moments that have combined to make her who she is.

  1. [Sixty years of HeLa cell cultures].

    PubMed

    Gilgenkrantz, Simone

    2014-01-01

    HeLa cells line was established in 1951 from cervical cancer cells taken from a young AfroAmerican patient, Henrietta Lacks, used without the permission of the family. Finally, in 2013, an agreement was established between the family and NIH: for any study, authorization is needed, first referred to a working group comprising scientists, ethicists and two members of the family.

  2. Health Care Decisions at the End of Life: Theological and Ethical Foundations for Decision Making.

    ERIC Educational Resources Information Center

    Allegretti, Joseph G.

    This paper provides a framework for making sense of perplexing problems surrounding issues of death and dying by exploring the theological and ethical background to health care decision making at the end of life. The paper first examines several of the basic principles that theologians and secular ethicists employ when analyzing such questions.…

  3. Application of a Mixed Consequential Ethical Model to a Problem Regarding Test Standards.

    ERIC Educational Resources Information Center

    Busch, John Christian

    The work of the ethicist Charles Curran and the problem-solving strategy of the mixed consequentialist ethical model are applied to a traditional social science measurement problem--that of how to adjust a recommended standard in order to be fair to the test-taker and society. The focus is on criterion-referenced teacher certification tests.…

  4. A Quasi-Experimental Study of Moral Reasoning of Undergraduate Business Students Using an Ethical Decision-Making Framework in a Basic Accounting Course

    ERIC Educational Resources Information Center

    Wilhelm, William J.; Czyzewski, Alan B.

    2006-01-01

    This study was designed to identify classroom interventions that can be used by core business course instructors (as opposed to trained business ethicists) to positively affect levels of moral reasoning in undergraduate business students. The quasi-experimental study conducted at a Midwestern university, focused on determining if the utilization…

  5. The birth of the empirical turn in bioethics.

    PubMed

    Borry, Pascal; Schotsmans, Paul; Dierickx, Kris

    2005-02-01

    Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence in bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between 'is' and 'ought' created a 'natural' border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared.

  6. In defense of bioethics.

    PubMed

    Baker, Robert

    2009-01-01

    Although bioethics societies are developing standards for clinical ethicists and a code of ethics, they have been castigated in this journal as "a moral, if not an ethics, disaster" for not having completed this task. Compared with the development of codes of ethics and educational standards in law and medicine, however, the pace of professionalization in bioethics appears appropriate. Assessed by this metric, none of the charges leveled against bioethics are justified. The specific charges leveled against the American Society for Bioethics and Humanities (ASBH) and its Core Competencies report are analyzed and rejected as artifacts of an ahistoric conception of the stages by which organizations professionalize. For example, the charge that the ASBH should provide definitive criteria for what counts as "medical ethics consultation" antecedent to further progress towards professionalization is assessed by comparing it with the American Medical Association's decades-long struggle to define who can legitimately claim the title "medical doctor." Historically, clarity about who is legitimately a doctor, a lawyer - or a "clinical ethicist"- is a byproduct of, and never antecedent to, the decades-long process by which a field professionalizes. The charges leveled against ASBH thus appear to be a function of impatient, ahistoric perfectionism.

  7. Power, Professional Naiveté and Environmental Icebergs: Navigating the Bioethics Ecosystem.

    PubMed

    Valadares, Kevin J

    2016-01-01

    Doing bioethics in the public arena of healthcare, government, business or academia takes courage and stamina. The effort involved must be greater than just supporting clients through disciplined arguments and an ongoing process of clarification. Beyond the argument, for ethicists to be of value, they must understand the importance of navigating power structures within the bioethics ecosystem and to recognize their own professional naiveté.

  8. Silencing the Singer. Antibioethics in Germany.

    PubMed

    Schöne-Seifert, B; Rippe, K P

    1991-01-01

    "Die Gedanken sind frei," in the words of the old song. But in Germany, thoughts are no longer free. Peter Singer, the "death ethicist," has become a special target for activists attempting to silence bioethical debate in Germany. In the context of the trauma inflicted by National Socialism, a profound unease over issues at the end of life is accompanied by an insistence that these issues are not to be discussed.

  9. Reflections on bioethics: consolidation of the principle of autonomy and legal aspects.

    PubMed

    Segre, M

    1999-01-01

    The author highlights the importance of emotions in all ethical reflections. He describes the most common positions of ethicists employing duties and rights as the basis for ethical thought. The author, goes to Freudian theory as viewed by the utilitarians, stating that the 'quest for pleasure' is not necessarily egocentric, especially for adults. For example, the feeling of solidarity emerges 'from the inside out', making irrelevant all the emphasis laid on obedience to duty (from the outside in). The article questions the essence of Kantian theory, based exclusively on 'reason' with disregard for feelings, by establishing what he considers a 'positivist' view of rational thought. It emphasizes the principle of autonomy, which it seen as basically opposing the principles of beneficence and fairness. It is proposed that the latter should be seen as what he calls heteronomy (a concept different from that of the rational ethicists). In theory, autonomy is not assigned to anyone on the basis of an external assessment. Any intervention in individual autonomy must be made (by the intervenor) when it becomes imperative in the defense of social or cultural values. The article distinguishes between ethics and morals) and states that the sole acceptable ethical principle is that ethics (theoretically) has no principle.

  10. The Durban World Congress Ethics Round Table Conference Report: I. Differences between withholding and withdrawing life-sustaining treatments.

    PubMed

    Sprung, Charles L; Paruk, Fathima; Kissoon, Niranjan; Hartog, Christiane S; Lipman, Jeffrey; Du, Bin; Argent, Andrew; Hodgson, R Eric; Guidet, Bertrand; Groeneveld, A B Johan; Feldman, Charles

    2014-12-01

    Withholding life-sustaining treatments (WHLST) and withdrawing life-sustaining treatments (WDLST) occur in most intensive care units (ICUs) around the world to varying degrees. Speakers from invited faculty of the World Federation of Societies of Intensive and Critical Care Medicine Congress in 2013 with an interest in ethics were approached to participate in an ethics round table. Participants were asked if they agreed with the statement "There is no moral difference between withholding and withdrawing a mechanical ventilator." Differences between WHLST and WDLST were discussed. Official statements relating to WHLST and WDLST from intensive care societies, professional bodies, and government statements were sourced, documented, and compared. Sixteen respondents stated that there was no moral difference between withholding or withdrawing a mechanical ventilator, 2 were neutral, and 4 stated that there was a difference. Most ethicists and medical organizations state that there is no moral difference between WHLST and WDLST. A review of guidelines noted that all but 1 of 29 considered WHLST and WDLST as ethically or legally equivalent. Most respondents, practicing intensivists, stated that there is no difference between WHLST and WDLST, supporting most ethicists and professional organizations. A minority of physicians still do not accept their equivalency. Copyright © 2014 Elsevier Inc. All rights reserved.

  11. Talking ethics with strangers: a view from Jewish tradition.

    PubMed

    Newman, L E

    1993-12-01

    The work of H. Tristram Engelhardt provides an important set of reflections for bioethics in a secular context. Taking Engelhardt's work as its point of departure this article explores the challenges that Jewish ethicists face in contributing to bioethics in a secular context. The article explores how the Jewish tradition can address issues in bioethics in ways that are true to its tradition and at the same time accessible and relevant to "moral strangers" in a secular society.

  12. Institutional Ethics Resources: Creating Moral Spaces.

    PubMed

    Hamric, Ann B; Wocial, Lucia D

    2016-09-01

    Since 1992, institutions accredited by The Joint Commission have been required to have a process in place that allows staff members, patients, and families to address ethical issues or issues prone to conflict. While the commission's expectations clearly have made ethics committees more common, simply having a committee in no way demonstrates its effectiveness in terms of the availability of the service to key constituents, the quality of the processes used, or the outcomes achieved. Beyond meeting baseline accreditation standards, effective ethics resources are requisite for quality care for another reason. The provision of care to the sick is a practice with profound moral dimensions. Clinicians need what Margaret Urban Walker has called "moral spaces," reflective spaces within institutions in which to explore and communicate values and ethical obligations as they undergird goals of care. Walker proposed that ethicists needed to be concerned with the design and maintenance of these moral spaces. Clearly, that concern needs to extend beyond ethicists to institutional leaders. This essay uses Walker's idea of moral space to describe individuals and groups who are actual and potential ethics resources in health care institutions. We focus on four requisite characteristics of effective resources and the challenges to achieving them, and we identify strategies to build them. In our view, such moral spaces are particularly important for nurses and their colleagues on interprofessional teams and need to be expanded and strengthened in most settings. © 2016 The Hastings Center.

  13. [Fourth evaluation of the law on the review of termination of life on request and assisted suicide (Euthanasia Act)].

    PubMed

    van der Heide, A; Onwuteaka-Philipsen, B D; van Delden, J J M; Gevers, J K M; van der Maas, P J; van der Wal, G

    2005-09-24

    This fall, an extensive study will start to evaluate the Dutch Euthanasia Act. This law was enacted in 2002. According to this law, physicians must report cases of euthanasia and physician-assisted suicide. The cases are then judged by regional euthanasia review committees consisting of a lawyer, a physician and an ethicist. Only if they conclude that the case does not meet the requirements for prudent practice, it will be sent to the public prosecutor. The study will be focused on the practice of medical end-of-life decision-making, the functioning and effects of the Euthanasia Act, and opinions of physicians about the scope of the law and the demarcation between different end-of-life decisions. The study will comprise 4 sub-studies: a judicial evaluation, a death certificate study, a survey among physicians and a panel study among physicians, nurses, members of euthanasia review committees, lawyers and ethicists. This study is the fourth in a row of nationwide studies into end-of-life practices that have been performed since 1990. The previous studies contributed to the public debate about medical care at the end of life and to the development of policy in this field. It is expected that this study, by providing up-to-date information on and insight into end-of-life care in the Netherlands, will do the same.

  14. The ethics of neonatal research: An ethicist's and a parents' perspective.

    PubMed

    Janvier, Annie; Farlow, Barbara

    2015-12-01

    The ethics of neonatal research are complex because vulnerable new parents are asked to provide consent on behalf of their fragile baby. Whereas clinical neonatal care has evolved to value personalized and shared decision-making, the goal of research ethics is still to standardize the informed consent process and make it as complete and thorough as possible. Ethicists, lawyers and physicians have shaped the field of research ethics and consent for research. The goal of detailed informed consent is to protect participants from harm, but procedures were developed without input from the principal stakeholders: ex-neonatal intensive care unit parents/patients. Empirical investigations examining patient and parental perspectives on research and research ethics are lacking. Rigorous investigations are needed to determine how parents of sick neonates want their families to be protected, knowing that a lack of research is also harmful. Large randomized controlled multicenter trials will always be needed to improve neonatal outcomes. These trials are costly and time-consuming. Currently, the way in which research is funded and regulated and the way in which academic merit is recognized lead to inefficiency and a waste of precious resources. Following a review of the history of research ethics, this article examines and discusses the ethics of research in neonatology. In addition, challenges and opportunities are identified and ideas for future investigations are proposed. Copyright © 2015 Elsevier Ltd. All rights reserved.

  15. How to Fairly Allocate Scarce Medical Resources: Ethical Argumentation under Scrutiny by Health Professionals and Lay People.

    PubMed

    Krütli, Pius; Rosemann, Thomas; Törnblom, Kjell Y; Smieszek, Timo

    2016-01-01

    Societies are facing medical resource scarcities, inter alia due to increased life expectancy and limited health budgets and also due to temporal or continuous physical shortages of resources like donor organs. This makes it challenging to meet the medical needs of all. Ethicists provide normative guidance for how to fairly allocate scarce medical resources, but legitimate decisions require additionally information regarding what the general public considers to be fair. The purpose of this study was to explore how lay people, general practitioners, medical students and other health professionals evaluate the fairness of ten allocation principles for scarce medical resources: 'sickest first', 'waiting list', 'prognosis', 'behaviour' (i.e., those who engage in risky behaviour should not be prioritized), 'instrumental value' (e.g., health care workers should be favoured during epidemics), 'combination of criteria' (i.e., a sequence of the 'youngest first', 'prognosis', and 'lottery' principles), 'reciprocity' (i.e., those who provided services to the society in the past should be rewarded), 'youngest first', 'lottery', and 'monetary contribution'. 1,267 respondents to an online questionnaire were confronted with hypothetical situations of scarcity regarding (i) donor organs, (ii) hospital beds during an epidemic, and (iii) joint replacements. Nine allocation principles were evaluated in terms of fairness for each type of scarcity along 7-point Likert scales. The relationship between demographic factors (gender, age, religiosity, political orientation, and health status) and fairness evaluations was modelled with logistic regression. Medical background was a major predictor of fairness evaluations. While general practitioners showed different response patterns for all three allocation situations, the responses by lay people were very similar. Lay people rated 'sickest first' and 'waiting list' on top of all allocation principles-e.g., for donor organs 83.8% (95% CI: [81.2%-86.2%]) rated 'sickest first' as fair ('fair' is represented by scale points 5-7), and 69.5% [66.2%-72.4%] rated 'waiting list' as fair. The corresponding results for general practitioners: 'prognosis' 79.7% [74.2%-84.9%], 'combination of criteria' 72.6% [66.4%-78.5%], and 'sickest first' 74.5% [68.6%-80.1%); these were the highest-rated allocation principles for donor organs allocation. Interestingly, only 44.3% [37.7%-50.9%] of the general practitioners rated 'instrumental value' as fair for the allocation of hospital beds during a flu epidemic. The fairness evaluations by general practitioners obtained for joint replacements: 'sickest first' 84.0% [78.8%-88.6%], 'combination of criteria' 65.6% [59.2%-71.8%], and 'prognosis' 63.7% [57.1%-70.0%]. 'Lottery', 'reciprocity', 'instrumental value', and 'monetary contribution' were considered very unfair allocation principles by both groups. Medical students' ratings were similar to those of general practitioners, and the ratings by other health professionals resembled those of lay people. Results are partly at odds with current conclusions proposed by some ethicists. A number of ethicists reject 'sickest first' and 'waiting list' as morally unjustifiable allocation principles, whereas those allocation principles received the highest fairness endorsements by lay people and to some extent also by health professionals. Decision makers are advised to consider whether or not to give ethicists, health professionals, and the general public an equal voice when attempting to arrive at maximally endorsed allocations of scarce medical resources.

  16. Ethics roundtable debate: Child with severe brain damage and an underlying brain tumour

    PubMed Central

    Gunn, Scott; Hashimoto, Satoru; Karakozov, Michael; Marx, Thomas; Tan, Ian KS; Thompson, Dan R; Vincent, Jean-Louis

    2004-01-01

    A young person presents with a highly malignant brain tumour with hemiparesis and limited prognosis after resection. She then suffers an iatrogenic cardiac and respiratory arrest that results in profound anoxic encephalopathy. A difference in opinion between the treatment team and the parent is based on a question of futile therapy. Opinions from five intensivists from around the world explore the differences in ethical and legal issues. A Physician-ethicist comments on the various approaches. PMID:15312199

  17. Troubling practices of control: re-visiting Hannah Arendt's ideas of human action as praxis of the unpredictable.

    PubMed

    Kohlen, Helen

    2015-07-01

    In this article, Hannah Arendt's concept of action will be used to problematize current transformations of the health care sector and examine some responses by ethicists in light of those transformations. The sphere of human interaction that should typify health care work is identified as an action of unpredictable praxis in contrast to controllable procedures and techniques which increasingly take place in the health care sector. © 2015 John Wiley & Sons Ltd.

  18. Medical ethics in an era of bioethics: resetting the medical profession's compass.

    PubMed

    Pellegrino, Edmund D

    2012-02-01

    What it means to be a medical professional has been defined by medical ethicists throughout history and remains a contemporary concern addressed by this paper. A medical professional is generally considered to be one who makes a public promise to fulfill the ethical obligations expressed in the Hippocratic Code. This presentation summarizes the history of medical professionalism and refocuses attention on the interpersonal relationship of doctor and patient. This keynote address was delivered at the Founders of Bioethics International Congress (June, 2010).

  19. Ethics rounds do not improve the handling of ethical issues by psychiatric staff.

    PubMed

    Silén, Marit; Haglund, Kristina; Hansson, Mats G; Ramklint, Mia

    2015-08-01

    One way to support healthcare staff in handling ethically difficult situations is through ethics rounds that consist of discussions based on clinical cases and are moderated by an ethicist. Previous research indicates that the handling of ethically difficult situations in the workplace might have changed after ethics rounds. This, in turn, would mean that the "ethical climate", i.e. perceptions of how ethical issues are handled, would have changed. To investigate whether ethics rounds could improve the ethical climate perceived by staff working in psychiatry outpatient clinics. In this quasi-experimental study, six inter-professional ethics rounds led by a philosopher/ethicist were conducted at two psychiatry outpatient clinics. Changes in ethical climate were measured at these clinics as well as at two control clinics at baseline and after the intervention period using the instrument Hospital Ethical Climate Survey. Within-groups comparisons of median sum scores of ethical climate showed that no statistically significant differences were found in the intervention group before or after the intervention period. The median sum scores for ethical climate were significantly higher, both at baseline and after the intervention period (P ≤ 0.001; P = 0.046), in the intervention group. Ethics rounds in psychiatric outpatient clinics did not result in significant changes in ethical climate. Outcomes of ethics rounds might, to a higher degree, be directed towards patient-related outcomes rather than towards the staff's working environment, as the questions brought up for discussion during the ethics rounds concerned patient-related issues.

  20. Hidden in plain view: feminists doing engineering ethics, engineers doing feminist ethics.

    PubMed

    Riley, Donna

    2013-03-01

    How has engineering ethics addressed gender concerns to date? How have the ideas of feminist philosophers and feminist ethicists made their way into engineering ethics? What might an explicitly feminist engineering ethics look like? This paper reviews some major themes in feminist ethics and then considers three areas in which these themes have been taken up in engineering ethics to date. First, Caroline Whitbeck's work in engineering ethics integrates considerations from her own earlier writings and those of other feminist philosophers, but does not use the feminist label. Second, efforts to incorporate the Ethic of Care and principles of Social Justice into engineering have drawn on feminist scholarship and principles, but these commitments can be lost in translation to the broader engineering community. Third, the film Henry's Daughters brings gender considerations into the mainstream of engineering ethics, but does not draw on feminist ethics per se; despite the best intentions in broaching a difficult subject, the film unfortunately does more harm than good when it comes to sexual harassment education. I seek not only to make the case that engineers should pay attention to feminist ethics and engineering ethicists make more use of feminist ethics traditions in the field, but also to provide some avenues for how to approach integrating feminist ethics in engineering. The literature review and analysis of the three examples point to future work for further developing what might be called feminist engineering ethics.

  1. Critiquing the Reasons for Making Artificial Moral Agents.

    PubMed

    van Wynsberghe, Aimee; Robbins, Scott

    2018-02-19

    Many industry leaders and academics from the field of machine ethics would have us believe that the inevitability of robots coming to have a larger role in our lives demands that robots be endowed with moral reasoning capabilities. Robots endowed in this way may be referred to as artificial moral agents (AMA). Reasons often given for developing AMAs are: the prevention of harm, the necessity for public trust, the prevention of immoral use, such machines are better moral reasoners than humans, and building these machines would lead to a better understanding of human morality. Although some scholars have challenged the very initiative to develop AMAs, what is currently missing from the debate is a closer examination of the reasons offered by machine ethicists to justify the development of AMAs. This closer examination is especially needed because of the amount of funding currently being allocated to the development of AMAs (from funders like Elon Musk) coupled with the amount of attention researchers and industry leaders receive in the media for their efforts in this direction. The stakes in this debate are high because moral robots would make demands on society; answers to a host of pending questions about what counts as an AMA and whether they are morally responsible for their behavior or not. This paper shifts the burden of proof back to the machine ethicists demanding that they give good reasons to build AMAs. The paper argues that until this is done, the development of commercially available AMAs should not proceed further.

  2. "She Just Doesn't Know Him Like We Do": Illuminating Complexities in Surrogate Decision Making.

    PubMed

    Eves, Margot M; Esplin, Bryn S

    2015-01-01

    When patients are not able to speak for themselves, surrogate decision makers are asked to guide treatment decisions and formulate a plan of care in accordance with what the patients would have wanted. This necessitates an exploration into the patients' views about life and how it should be lived, how the patients constructed their identity or life story, and their attitudes towards sickness and suffering. When an individual appoints a surrogate, such as a healthcare power of attorney, a common presumption is that this designation evinces merit. This obscures the possibility of multiple other considerations that influence individual choice. This article presents a clinical case in which the claim to know someone best created a controversy that brought treatment decisions to a standstill. Further, it illuminates how the question, "Given the current medical condition, what would this person want?" risks presuming that a singular, unambiguous preference exists and that one person can provide the answer. Clinical ethicists can play a vital role in situations when there is a dispute among a designated surrogate and family members over a patient's preference. By embracing the complexity of the desire to synthesize seemingly irreconcilable perspectives about identity, uncovering the reasons that underlie disagreement, and guiding inquiry in such a way that allows stakeholders to move beyond the conflict, clinical ethicists can facilitate decision making that honors the patient and may mitigate moral distress. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

  3. Drugs, money, and power: the Canadian drug shortage.

    PubMed

    Kaposy, Chris

    2014-03-01

    This article describes the shortage of generic injectable medications in Canada that affected hospitals in 2012. It traces the events leading up to the drug shortage, the causes of the shortage, and the responses by health administrators, pharmacists, and ethicists. The article argues that generic drug shortages are an ethical problem because health care organizations and governments have an obligation to avoid exposing patients to resource scarcity. The article also discusses some options governments could pursue in order to secure the drug supply and thereby fulfill their ethical obligations.

  4. The relationship between medical ethics and the legal system in Italy: food for thought.

    PubMed

    Petrini, Carlo; Ricciardi, Walter

    2016-01-01

    Relations between ethics in general - and medical ethics in particular - and legal systems are complex and have been extensively examined in the literature. The topic is important not only for ethicists and jurists, but also for members of the public, who benefit from the services offered by the professions. While the Italian Institute of Health does not claim to propose new avenues for exploration of the relations between ethics and legal systems, it offers some food for thought in the ongoing debate.

  5. Learning by doing. Training health care professionals to become facilitator of moral case deliberation.

    PubMed

    Stolper, Margreet; Molewijk, Bert; Widdershoven, Guy

    2015-03-01

    Moral case deliberation (MCD) is a dialogue among health care professionals about moral issues in practice. A trained facilitator moderates the dialogue, using a conversation method. Often, the facilitator is an ethicist. However, because of the growing interest in MCD and the need to connect MCD to practice, healthcare professionals should also become facilitators themselves. In order to transfer the facilitating expertise to health care professionals, a training program has been developed. This program enables professionals in health care institutions to acquire expertise in dealing with moral questions independent of the expertise of an (external) ethicist. Over the past 10 years, we developed a training program with a specific mix of theory and practice, aiming to foster the right attitude, skills and knowledge of the trainee. The content and the didactics of the training developed in line with the philosophy of MCD: pragmatic hermeneutics, dialogical ethics and Socratic epistemology. Central principles are: 'learning by doing', 'reflection instead of ready made knowledge', and 'dialogue on dialogue'. This paper describes the theoretical background and the didactic content of the current training. Furthermore, we present didactic tools which we developed for stimulating active learning. We also go into lessons we learned in developing the training. Next, we provide some preliminary data from evaluation research of the training program by participants. The discussion highlights crucial aspects of educating professionals to become facilitators of MCD. The paper ends with concluding remarks and a plea for more evaluative evidence of the effectiveness and meaning of this training program for doing MCD in institutions.

  6. How to Fairly Allocate Scarce Medical Resources: Ethical Argumentation under Scrutiny by Health Professionals and Lay People

    PubMed Central

    Rosemann, Thomas; Törnblom, Kjell Y.

    2016-01-01

    Background Societies are facing medical resource scarcities, inter alia due to increased life expectancy and limited health budgets and also due to temporal or continuous physical shortages of resources like donor organs. This makes it challenging to meet the medical needs of all. Ethicists provide normative guidance for how to fairly allocate scarce medical resources, but legitimate decisions require additionally information regarding what the general public considers to be fair. The purpose of this study was to explore how lay people, general practitioners, medical students and other health professionals evaluate the fairness of ten allocation principles for scarce medical resources: ‘sickest first’, ‘waiting list’, ‘prognosis’, ‘behaviour’ (i.e., those who engage in risky behaviour should not be prioritized), ‘instrumental value’ (e.g., health care workers should be favoured during epidemics), ‘combination of criteria’ (i.e., a sequence of the ‘youngest first’, ‘prognosis’, and ‘lottery’ principles), ‘reciprocity’ (i.e., those who provided services to the society in the past should be rewarded), ‘youngest first’, ‘lottery’, and ‘monetary contribution’. Methods 1,267 respondents to an online questionnaire were confronted with hypothetical situations of scarcity regarding (i) donor organs, (ii) hospital beds during an epidemic, and (iii) joint replacements. Nine allocation principles were evaluated in terms of fairness for each type of scarcity along 7-point Likert scales. The relationship between demographic factors (gender, age, religiosity, political orientation, and health status) and fairness evaluations was modelled with logistic regression. Results Medical background was a major predictor of fairness evaluations. While general practitioners showed different response patterns for all three allocation situations, the responses by lay people were very similar. Lay people rated ‘sickest first’ and ‘waiting list’ on top of all allocation principles—e.g., for donor organs 83.8% (95% CI: [81.2%–86.2%]) rated ‘sickest first’ as fair (‘fair’ is represented by scale points 5–7), and 69.5% [66.2%–72.4%] rated ‘waiting list’ as fair. The corresponding results for general practitioners: ‘prognosis’ 79.7% [74.2%–84.9%], ‘combination of criteria’ 72.6% [66.4%–78.5%], and ‘sickest first’ 74.5% [68.6%–80.1%); these were the highest-rated allocation principles for donor organs allocation. Interestingly, only 44.3% [37.7%–50.9%] of the general practitioners rated ‘instrumental value’ as fair for the allocation of hospital beds during a flu epidemic. The fairness evaluations by general practitioners obtained for joint replacements: ‘sickest first’ 84.0% [78.8%–88.6%], ‘combination of criteria’ 65.6% [59.2%–71.8%], and ‘prognosis’ 63.7% [57.1%–70.0%]. ‘Lottery’, ‘reciprocity’, ‘instrumental value’, and ‘monetary contribution’ were considered very unfair allocation principles by both groups. Medical students’ ratings were similar to those of general practitioners, and the ratings by other health professionals resembled those of lay people. Conclusions Results are partly at odds with current conclusions proposed by some ethicists. A number of ethicists reject ‘sickest first’ and ‘waiting list’ as morally unjustifiable allocation principles, whereas those allocation principles received the highest fairness endorsements by lay people and to some extent also by health professionals. Decision makers are advised to consider whether or not to give ethicists, health professionals, and the general public an equal voice when attempting to arrive at maximally endorsed allocations of scarce medical resources. PMID:27462880

  7. Synthetic biology and the ethics of knowledge

    PubMed Central

    Douglas, Thomas; Savulescu, Julian

    2011-01-01

    Synthetic biologists aim to generate biological organisms according to rational design principles. Their work may have many beneficial applications, but it also raises potentially serious ethical concerns. In this article, we consider what attention the discipline demands from bioethicists. We argue that the most important issue for ethicists to examine is the risk that knowledge from synthetic biology will be misused, for example, in biological terrorism or warfare. To adequately address this concern, bioethics will need to broaden its scope, contemplating not just the means by which scientific knowledge is produced, but also what kinds of knowledge should be sought and disseminated. PMID:20935316

  8. Ethical, legal, and psychodynamic considerations in intervention of a possible cult member.

    PubMed

    Berland, D I; Spinazzola, V L; Brayer, E; O'Rourke, K; Goldner, J; Shopper, M

    1990-11-01

    A 17-year-old boy is brought involuntarily by his parents for admission to an adolescent unit after running away from home to join a cult. The adolescent is admitted to the hospital for a multidisciplinary assessment. Follow-up 6 months after discharge shows the family to have continued in family therapy with the patient remaining at home with no additional contact with the cult. The case raises important ethical and dynamic issues about whom the child psychiatrist serves--the parents, the adolescent, or society. Discussion by an ethicist, lawyer, and child and adolescent psychoanalyst follows the case presentation.

  9. Live kidney donations and the ethic of care.

    PubMed

    Kane, Francis; Clement, Grace; Kane, Mary

    2008-09-01

    In this paper, we seek to re-conceptualize the ethical framework through which ethicists and medical professionals view the practice of live kidney donations. The ethics of organ donation has been understood primarily within the framework of individual rights and impartiality, but we show that the ethic of care captures the moral situation of live kidney donations in a more coherent and comprehensive way, and offers guidance for practitioners that is more attentive to the actual moral transactions among donors and recipients. A final section offers guidelines for the practice of live kidney transplants that emerge from an ethic of care.

  10. Bioethics and health disparity: Adding diversity to the debate.

    PubMed

    Chilton, Janice Allen; Hajek, Richard A

    2006-01-01

    Advances in biomedical science and technology have raised profound challenges to the way we think, feel, and act regarding human practices and ideals. Ethicists are needed from diverse populations who can enhance moral debate by offering cultural insight as choices are made as to how society should approach the expanding medical and biological possibilities. In this text, we review comments from bioethicists who are focusing on the moral issues surrounding health disparity. The purpose of the report is to ask the reader to begin to understand how to be an informed partner in this ethical debate.

  11. Life in the cloud and freedom of speech.

    PubMed

    Harris, John

    2013-05-01

    This paper is primarily about the personal and public responsibilities of ethics and of ethicists in speaking, writing and commenting publicly about issues of ethical, political and social significance. The paper argues that any such interventions are 'willy-nilly', actually or potentially, in the public domain in ways that make any self-conscious decision about intended publics or audiences problematic. In it is argued that a famous, and hitherto useful, distinction relating to the ethical limitations on freedom of speech which we owe to John Stuart Mill may, because of the emergence of 'the cloud' have become redundant or inoperable.

  12. Sturdy for common things: cultivating moral sensemaking on the front lines of practice.

    PubMed

    Browning, David M

    2012-04-01

    This essay argues that the field of bioethics should concern itself especially with the process of making moral sense that unfolds among clinicians, patients and family members during common but high-stakes conversations occurring on the front lines of practice. The essay outlines the parameters of a bioethics grounded in the moral experience of patients, families and practitioners. It challenges ethicists, educators, and clinician leaders to commit themselves to advocating and developing creative approaches to learning that will cultivate the moral sensibilities of frontline clinicians in this critically important domain of practice.

  13. AIDS and the future of reproductive freedom.

    PubMed

    Bayer, Ronald

    1990-01-01

    The specter of pediatric AIDS fundamentally challenges elements of the liberal ideological basis of women's reproductive freedom. Many public health officials hold that preventing transmission of HIV from mother to fetus requires efforts to discourage pregnancy by infected women. For over two decades, however, genetic counselors, feminists, and medical ethicists have stressed the importance of nondirective counseling in the context of reproductive choice. The question now confronted by American society is whether it will be possible to frame an ideology of reproductive choice that recognizes the limits of liberal individualism, while preserving the basic features of reproductive freedom.

  14. Guidelines for stem cell science and clinical translation.

    PubMed

    Pandya, Sunil K

    2016-01-01

    The International Society for Stem Cell Research has released its updated guidelines for stem cell research in order to provide "assurance that stem cell research is conducted with scientific and ethical integrity and that new therapies are evidence-based." The guidelines were updated by a Guidelines Update Task Force consisting of twenty-five scientists, ethicists and experts in health care policy from nine countries. The chairpersons of this task force are Jonathan Kimmelman, George Daley and Insoo Hyun. There is no representative from India; the only person of Indian origin on it, Mahendra Rao, represents The New York Stem Cell Foundation.

  15. [Animal protection without limits? Human-animal relations in between anthropomorphism and objectification].

    PubMed

    Grimm, Herwig; Hartnack, Sonja

    2013-01-01

    In view of recent developments in human-animal relations, vets and ethicists face a new problem: On the one hand, animals such as mammals and birds are used extensively and are in danger to be reduced to mere production units e. g. in the agricultural production, measuring devices in laboratories, sports equipment etc. On the other hand, biologically similar animals are perceived as family members or partners and are almost treated like humans. The article summarizes the results of a workshop that dealt with reductionism and anthropomorphism in human-animal relations. Vets and ethicists tackled the question how the unequal treatment of biologically similar animals can be better understood and whether it can be ethically justified. In the first section, the problem of inconsistency in human-animals relations is briefly sketched. The second part of the article addresses the ethics of unequal treatment of similar animals in different contexts. The following section inquires possible solutions and the advantages and disadvantages of biological criteria versus social criteria in animal protection. Finally, the background and reasons for our moral intuitions of injustice associated with the inconsistencies in human-animal relations are outlined. This fourth section refers to the presentation of Peter Kunzmann during the workshop on the unequal treatment of equals.The article closes with some general remarks on the issue. One main result of the workshop can be stated as follows: Due to the fact that the various human-animal relations gain their ethical justification from different ethical reasons, the unequal treatment of similar animals in different contexts is not ethically wrong per se. However, every intrusive dealing or interaction with animals is in itself in need of ethical justification.

  16. Patient retention gifts in clinical trials - undue inducement or justified motivational tools?

    PubMed

    Burgess, L J; Sulzer, N

    2011-09-05

    The use of retention gifts in clinical trials has been controversial, with some ethicists maintaining that such gifts represent undue inducement to the trial participants. A study was conducted at TREAD Research, a site-managed organisation based at Tygerberg Hospital, in which 302 participants completed a questionnaire that focused on their opinion with regard to such gifts. The results suggest that these gifts do not influence patients to participate in a clinical trial or influence them to remain on a trial should they wish to withdraw. However, they do act as a useful motivational tool and trial participants appreciate them.

  17. Virtue Ethics, and the Historiography of Science.

    PubMed

    Hicks, Daniel J; Stapleford, Thomas A

    2016-09-01

    “Practice” has become a ubiquitous term in the history of science, and yet historians have not always reflected on its philosophical import and in particular on its potential connections with ethics. This essay draws on the work of the virtue ethicist Alasdair MacIntyre to develop a theory of “communal practices” and explore how such an approach can inform the history of science, including allegations about the corruption of science by wealth or power, consideration of scientific ethics or “moral economies,” the role of values in science, the ethical distinctiveness (or not) of scientific vocations, and the relationship between history of science and the practice of science itself.

  18. Ethical, financial, and policy considerations in hand transplantation.

    PubMed

    Chang, Jeff; Mathes, David W

    2011-11-01

    Currently, more than 65 hand transplants have been performed with studies demonstrating favorable cosmetic and functional outcomes and cortical reintegration of the transplanted hand. Due to such favorable outcomes, many view hand transplant as a potential gold standard for treatment of a double amputee. However, ethical debate continues regarding risks and benefits of this nonlifesaving procedure. Clinicians, patients, and society must agree on whether hand transplantation is ethical and affordable. If a decision is made to transplant a hand, this must be performed in a dedicated center that facilitates integration of multiple specialists, ethicists, pharmacists, and rehabilitationists. Copyright © 2011 Elsevier Inc. All rights reserved.

  19. Not just euthanasia: recognizing a legal positive right to palliative care.

    PubMed

    Colombo, Sylviane

    2005-03-01

    As jurists, doctors, and ethicists are increasingly engaged in the debate as to whether and how to legalize euthanasia as a matter of public policy, less debate takes place on what it is submitted ought naturally to come before, i.e. the affirmation of a legal right to palliative care. In Israel, the draft law The Terminally Ill Patient (2001) includes a palliative care provision. It is submitted that such provision, laudable as it is, appears within a euthanasia-oriented framework and is given too limited a scope. Hence the suggestion that palliative care be given an autonomous role, and be recognized as a positive legal right.

  20. The "four quadrants" approach to clinical ethics case analysis; an application and review.

    PubMed

    Sokol, D K

    2008-07-01

    In 1982, Jonsen, Siegler and Winslade published Clinical Ethics, in which they described the "four quadrants" approach, a new method of analysing clinical ethics cases. Although the book is now in its 6th edition, a literature search has revealed only one academic paper demonstrating the method at work. This paper is an attempt to start filling this gap. As a way of describing and testing the approach, I apply the four quadrants method to a detailed clinical ethics case. The analysis is interspersed with reflections on the method itself. It is hoped that this experiment will encourage ethicists and clinicians to devote more attention to this neglected approach.

  1. Medical futility and nursing.

    PubMed

    Taylor, C

    1995-01-01

    Defining medical futility is central to the efforts of clinicians and ethicists who seek to identify the limits of patient autonomy. This article is a critique of current efforts to define and then use policies of medical futility to justify refusing requests for treatment and care that have no perceived medical benefit. After exploring the current definitions of medical futility in the bioethics and clinical literature, comparisons of the advantages and disadvantages of the following three options are provided: allowing patients to decide all but physiologic futility, allowing clinicians to decide futility, and pursuing negotiated compromise. The third option--negotiated compromise--is recommended. A role is developed for nurses in preventing and resolving conflict about futile treatment.

  2. Battlefield ethics training: integrating ethical scenarios in high-intensity military field exercises.

    PubMed

    Thompson, Megan M; Jetly, Rakesh

    2014-01-01

    There is growing evidence that modern missions have added stresses and ethical complexities not seen in previous military operations and that there are links between battlefield stressors and ethical lapses. Military ethicists have concluded that the ethical challenges of modern missions are not well addressed by current military ethics educational programs. Integrating the extant research in the area, we propose that scenario-based operational ethics training in high-intensity military field training settings may be an important adjunct to traditional military ethics education and training. We make the case as to why this approach will enhance ethical operational preparation for soldiers, supporting their psychological well-being as well as mission effectiveness.

  3. 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.

  4. Battlefield ethics training: integrating ethical scenarios in high-intensity military field exercises

    PubMed Central

    Thompson, Megan M.; Jetly, Rakesh

    2014-01-01

    There is growing evidence that modern missions have added stresses and ethical complexities not seen in previous military operations and that there are links between battlefield stressors and ethical lapses. Military ethicists have concluded that the ethical challenges of modern missions are not well addressed by current military ethics educational programs. Integrating the extant research in the area, we propose that scenario-based operational ethics training in high-intensity military field training settings may be an important adjunct to traditional military ethics education and training. We make the case as to why this approach will enhance ethical operational preparation for soldiers, supporting their psychological well-being as well as mission effectiveness. PMID:25206947

  5. How Should We Value a Planet?

    NASA Astrophysics Data System (ADS)

    Haqq-Misra, J.

    2014-04-01

    The idea that a planet or its biota may be intrinsically valuable, apart from its usefulness to humans, is contentious among ethicists, while difficulties abound in attempting to decide what is objectively better or worse for a planet or life. As a way of dissecting the issue of value and life, I present a two-axis comparative tool for ethical frameworks that considers the intrinsic or instrumental value placed upon organisms, environments, planetary systems, and space. I discuss ethical considerations relevant to contemporary space exploration, near-future human exploration of Solar System bodies, and long-term possibilities of interplanetary colonization. This allows for more transparent discussions of value with regard to future space exploration or the discovery of extraterrestrial life.

  6. [Desire for a child and desired children--possibilities and limits of reproductive biomedicine].

    PubMed

    Krones, Tanja; Neuwohner, Elke; El Ansari, Susan; Wissner, Thomas; Richter, Gerd

    2006-03-01

    Definition of problem: Reproductive Biomedicine and new reproductive technologies (ART) belong to the fields of medicine that initiated most of the discussion on enhancement and desire fulfilling medicine in bioethics during the last years. One of the crucial questions to be answered is the definition of the right to procreate/right for a genetically related child. Closely connected are controversial opinions in regard to the definition of sterility as a disease/illness, or a mere fate, or malfunction, which does not have to be medically cured. Arguments: After a cursory description of the national and international debate, we introduce some results of our 'bioethical field studies', exploring and comparing the views of experts (human geneticists, ethicists, pediatricians, obstetricians and midwifes) and couples/patients (IVF couples, high genetic risk couples and couples with no known risk for an inherited disease or infertility problem) on sterility, the right to procreate, possibilities and appropriate limits of IVF in Germany. According to the WHO, sterility has to be defined as an illness, if the respective couples have a desire for a child. IVF can be a means for a cure. Since 2004, Germany does no longer supply a thoroughly insurer financed IVF treatment. Our surveys indicate that this change, though supported by many experts, is hard to accept for couples concerned. Only obstetricians share the WHO's view that sterility should count as an illness. Many ethicists see a proclaimed human right to procreate as merely negative right, although many support free IVF treatment for poor couples. We challenge the expert majority view on the basis of the capability approach (Amartya Sen) and functional liberalism (Herlinde Pauer Studer) and with a view to the international state of the art in IVF. The desire to have children cannot be reduced to a non-authoritative preference whose fulfillment is optional, but has to be conceptualized as a normative need that ought to be met.

  7. Ethics in scientific communication: study of a problem case.

    PubMed

    Berger, R L

    1994-12-01

    The hypothermia experiments performed on humans during the Second World War at the German concentration camp in Dachau have been regarded as crimes against humanity, disguised as medical research. For almost 50 years, scientists maintained that the study produced valuable, even if not totally reliable, information. In recent years, the results from the Dachau hypothermia project were glamorized with life-saving potential and a heated ethical dialogue was activated about the use of life-saving but tainted scientific information. In the wake of the debate, an in-depth examination of the scientific rigour of the project was performed and revealed that neither the science nor the scientists from Dachau could be trusted and that the data were worthless. The body of medical opinion accepted the unfavourable determination but a few scientists and ethicists have continued to endorse the validity, of at least parts, of the Dachau hypothermia data. The conduct of the scientific communications about the Dachau hypothermia experiments by the scientific and ethical communities invites serious consideration of a possible ethical misadventure. It appears that for almost 50 years, the results of the study had been endorsed without careful examination of the scientific base of the experiments and that secondary citation of relevant original material may have been commonly employed. These infractions contributed to a myth that good science was practised by the Nazis at Dachau. The more recent emphasis on the life-saving potential of the Dachau data, without citation of credible supporting evidence, has also been misleading. Similarly, acceptance of a determination by an in-depth examination that the 'whole' Dachau project if flawed with simultaneous endorsement of the validity of 'parts' of the results, poses an ethical problem. It is advisable that before seeking ethical consultation about the use of unethically obtained data, scientists should examine the quality of science behind the controversial information and ethicists should verify the integrity of the material prior to engaging in a dialogue.

  8. Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology.

    PubMed

    Cummings, Christy L; Geis, Gina M; Feldman, Henry A; Berson, Elisa R; Kesselheim, Jennifer C

    2018-05-10

    To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethics. We adapted a published test of ethics knowledge for use in neonatology. The novel instrument had 46 true/false questions distributed among 7 domains of neonatal ethics: ethical principles, professionalism, genetic testing, beginning of life/viability, end of life, informed permission/decision making, and research ethics. Content and correct answers were derived from published statements and guidelines. We administered the voluntary, anonymous test via e-mailed link to 103 participants, including medical students, neonatology fellows, neonatologists, neonatology nurses, and pediatric ethicists. After item reduction, we examined psychometric properties of the resulting 36-item test and assessed overall sample performance. The overall response rate was 27% (103 of 380). The test demonstrated good internal reliability (Cronbach α = 0.66), with a mean score of 28.5 ± 3.4 out of the maximum 36. Participants with formal ethics training performed better than those without (30.3 ± 2.9 vs 28.1 ± 3.5; P = .01). Performance improved significantly with higher levels of medical/ethical training among the 5 groups: medical students, 25.9 ± 3.7; neonatal nurses/practitioners, 27.7 ± 2.7; neonatologists, 28.8 ± 3.7; neonatology fellows, 29.8 ± 2.9; and clinical ethicists, 33.0 ± 1.9 (P < .0001). The TEK-Neo reliably assesses knowledge of neonatal ethics among interprofessional staff and trainees in neonatology. This novel tool discriminates between learners with different levels of expertise and can be used interprofessionally to assess individual and group performance, track milestone progression, and address curricular gaps in neonatal ethics. Copyright © 2018 Elsevier Inc. All rights reserved.

  9. Ethics in scientific communication: study of a problem case.

    PubMed Central

    Berger, R L

    1994-01-01

    The hypothermia experiments performed on humans during the Second World War at the German concentration camp in Dachau have been regarded as crimes against humanity, disguised as medical research. For almost 50 years, scientists maintained that the study produced valuable, even if not totally reliable, information. In recent years, the results from the Dachau hypothermia project were glamorized with life-saving potential and a heated ethical dialogue was activated about the use of life-saving but tainted scientific information. In the wake of the debate, an in-depth examination of the scientific rigour of the project was performed and revealed that neither the science nor the scientists from Dachau could be trusted and that the data were worthless. The body of medical opinion accepted the unfavourable determination but a few scientists and ethicists have continued to endorse the validity, of at least parts, of the Dachau hypothermia data. The conduct of the scientific communications about the Dachau hypothermia experiments by the scientific and ethical communities invites serious consideration of a possible ethical misadventure. It appears that for almost 50 years, the results of the study had been endorsed without careful examination of the scientific base of the experiments and that secondary citation of relevant original material may have been commonly employed. These infractions contributed to a myth that good science was practised by the Nazis at Dachau. The more recent emphasis on the life-saving potential of the Dachau data, without citation of credible supporting evidence, has also been misleading. Similarly, acceptance of a determination by an in-depth examination that the 'whole' Dachau project if flawed with simultaneous endorsement of the validity of 'parts' of the results, poses an ethical problem. It is advisable that before seeking ethical consultation about the use of unethically obtained data, scientists should examine the quality of science behind the controversial information and ethicists should verify the integrity of the material prior to engaging in a dialogue. PMID:7861424

  10. Deception in medical and behavioral research: is it ever acceptable?

    PubMed

    Wendler, D

    1996-01-01

    Ethicists argue that deception is unacceptable, whereas researchers regard it as a necessary part of (certain kinds of) research. This impasse could be resolved by establishing the specific conditions under which deception in medical and behavioral research can be tolerated. An approach based on a consideration of the "Ethical Principles of Psychologists and Code of Conduct," one of the few writings on this topic, would satisfy the needs of both parties. It takes the form of a requirement that subjects be informed of the use of deception before enrolling in a deceptive study. This "second order consent" approach to acceptable deception represents our best chance for reconciling respect for subjects with the occasional scientific need for deceptive research.

  11. A Canadian Working Group report on fecal microbial therapy: Microbial ecosystems therapeutics

    PubMed Central

    Allen-Vercoe, Emma; Reid, Gregor; Viner, Norman; Gloor, Gregory B; Hota, Susy; Kim, Peter; Lee, Christine; O’Doherty, Kieran C; Vanner, Stephen J; Weese, J Scott; Petrof, Elaine O

    2012-01-01

    A working group from across Canada comprised of clinician and basic scientists, epidemiologists, ethicists, Health Canada regulatory authorities and representatives of major funding agencies (Canadian Institutes of Health Research and the Crohn’s and Colitis Foundation of Canada) met to review the current experience with fecal microbial therapy and to identify the key areas of study required to move this field forward. The report highlights the promise of fecal microbial therapy and related synthetic stool therapy (together called ‘microbial ecosystems therapeutics’) for the treatment of Clostridium difficile colitis and, possibly, other disorders. It identifies pressing clinical issues that need to be addressed as well as social, ethical and regulatory barriers to the use of these important therapies. PMID:22803022

  12. Analysis of pediatric lung donor allocation policy: a call for change?

    PubMed

    Gajarski, Robert; Bowman, Diana M

    2015-04-01

    In an unprecedented legal ruling in June 2013, a US federal district court judge decided that the existing policy for donor lung allocation be vacated to save the life of a ten-year-old girl dying from cystic fibrosis. This case has fueled much controversy in the United States among policy makers, ethicists, and physicians who treat other patients awaiting transplant. This article examines the creation of the current US lung allocation policy and its impact on outcomes and analyzes the multidimensionality of the ruling. After analyzing the current policy and investigating alternatives for donor pool expansion, the article concludes by articulating options that may mitigate the need for current policy revision. Copyright © 2015 by Duke University Press.

  13. Experimentation with human subjects: a critique of the views of Hans Jonas.

    PubMed Central

    Schafer, A

    1983-01-01

    The ethics of experimentation on human subjects has become the subject of much debate among medical scientists and philosophers. Ethical problems and conflicts of interest become especially serious when research subjects are recruited from the class of patients. Are patients who are ill and suffering in a position to give voluntary and informed consent? Are there inevitable conflicts of interest and moral obligation when a personal physician recruits his own patients for an experiment designed partly to advance scientific knowledge and only partly as therapy for those patients? The views of the eminent American ethicist Hans Jonas on these issues are briefly summarised and criticised, and some moral guidelines are then proposed to regulate experimentation on human subjects. PMID:6876101

  14. Common Principles and Multiculturalism

    PubMed Central

    Zahedi, Farzaneh; Larijani, Bagher

    2009-01-01

    Judgment on rightness and wrongness of beliefs and behaviors is a main issue in bioethics. Over centuries, big philosophers and ethicists have been discussing the suitable tools to determine which act is morally sound and which one is not. Emerging the contemporary bioethics in the West has resulted in a misconception that absolute westernized principles would be appropriate tools for ethical decision making in different cultures. We will discuss this issue by introducing a clinical case. Considering various cultural beliefs around the world, though it is not logical to consider all of them ethically acceptable, we can gather on some general fundamental principles instead of going to the extremes of relativism and absolutism. Islamic teachings, according to the presented evidence in this paper, fall in with this idea. PMID:23908720

  15. Treating handicapped newborns: suggestions for institutional policy.

    PubMed

    Thomas, E H; Andersen, K S; Franz, J E

    1986-01-01

    In October 1984 a conference of physicians and other health professionals, attorneys, members of the press, ethicists, and social scientists met at the State University of New York at Stony Brook to consider the medical, ethical, and social issues raised by the treatment of handicapped newborns. Presented here is a summary of guidelines for the implementation of their most important recommendation--the establishment of institutional policies concerning the internal decision making process regarding treatment and the procedures for sharing information about controversial cases with the public. The guidelines address the medical problems of diagnosis, prognosis, and clinical decision making; institutional responses to controversy within the institution and to the media and the public; and the composition and role of institutional review committees.

  16. Common principles and multiculturalism.

    PubMed

    Zahedi, Farzaneh; Larijani, Bagher

    2009-01-01

    Judgment on rightness and wrongness of beliefs and behaviors is a main issue in bioethics. Over centuries, big philosophers and ethicists have been discussing the suitable tools to determine which act is morally sound and which one is not. Emerging the contemporary bioethics in the West has resulted in a misconception that absolute westernized principles would be appropriate tools for ethical decision making in different cultures. We will discuss this issue by introducing a clinical case. Considering various cultural beliefs around the world, though it is not logical to consider all of them ethically acceptable, we can gather on some general fundamental principles instead of going to the extremes of relativism and absolutism. Islamic teachings, according to the presented evidence in this paper, fall in with this idea.

  17. Canada: the Mandarin bureaucracy.

    PubMed

    Bayles, M D; Freedman, B

    1984-12-01

    In the authors' opinion, Canada is a developing country in the field of bioethics. Public interest in ethical dilemmas is sporadic and sparked by media reports of controversies. Professional interest is strategic and directed at issues such as health care funding and the impact of new technologies. Bioethics courses are offered in some undergraduate programs and professional schools. Policy developments reflect government control of health care and the drafting of legislation by civil servants rather than by elected representatives. Special commissions are frequently assigned the task of formulating a rational, apolitical policy on controversial issues, although their recommendations are not always enacted into law. Some bioethics research is done in the private sector by university faculty, medical associations, and ethicists at Canada's three bioethics centers.

  18. Best interests: what problems in family law should health care law avoid?

    PubMed

    Holm, Søren

    2008-09-01

    This article comments briefly on three specific issues in Shazia Choudhry's paper "'Best Interests' What can healthcare law learn from family law?" The three issues are: (1) the implications of 'best interests' and 'welfare science' for women within the family law and the health care law context, (2) the risk of capture by the 'welfare science' industry, and (3) the proposal that a committee of medical experts and medical ethicists should be set up to provide reports to the Court of Protection on cases brought under the Mental Capacity Act 2005 (MCA). I argue that the risk of capture by 'welfare science' is equally large in health care law and that a committee of the kind envisaged by Choudhry is unlikely to contribute significantly to conflict resolution under the MCA.

  19. Withdrawing may be preferable to withholding

    PubMed Central

    Vincent, Jean-Louis

    2005-01-01

    The majority of deaths on the intensive care unit now occur following a decision to limit life-sustaining therapy, and end-of-life decision making is an accepted and important part of modern intensive care medical practice. Such decisions can essentially take one of two forms: withdrawing – the removal of a therapy that has been started in an attempt to sustain life but is not, or is no longer, effective – and withholding – the decision not to make further therapeutic interventions. Despite wide agreement by Western ethicists that there is no ethical difference between these two approaches, these issues continue to generate considerable debate. In this article, I will provide arguments why, although the two actions are indeed ethically equivalent, withdrawing life-sustaining therapy may in fact be preferable to withholding. PMID:15987405

  20. Convergence. Final Report

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

    Needham, C.; McPherson, K.

    2004-03-10

    We contacted 125 scientists, ethicists, legal scholars, social scientists and informal science educators to participate in a short survey designed to identify critical issues related to nanotechnology. Fifty-six (45%) responded positively, and 46 completed the survey. We then conducted a series of interviews and site visits based on scientific area, and regional representation. Key points are summarized in the attached table. Based on the results of our surveys, we were able to construct three strong areas of ethical, legal, social, and environmental issues around which to build socratic dialogs in a standard Fred Friendly Seminar format. We were also ablemore » to identify 4 science center/museum partnerships and a proposal has been submitted to NSF's NISE Program. We are preparing to submit proposals to other agencies and foundations for support.« less

  1. The Case of Ms D: A Family's Request for Posthumous Procurement of Ovaries.

    PubMed

    Guidry-Grimes, Laura

    2016-01-01

    The MedStar Washington Hospital Center clinical ethics team became involved in a case when the family requested the posthumous removal of a patient's ovaries for future reproductive use. This case presents a novel question for clinical ethicists, since the technology for posthumous female reproduction is still in development. In the bioethics literature, the standard position is to refuse to comply with such a request, unless there is explicit consent or evidence of explicit conversations that demonstrate the deceased would have wanted this option pursued. Ms D's case, we suggest, offers an exception to this default position; complying with the family's request could have been ethically permissible in this case, had it been medically feasible. Copyright 2016 The Journal of Clinical Ethics. All rights reserved.

  2. Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

    PubMed

    Hanson, Bridget L; Faulkner, Sherilyn A; Brems, Christiane; Corey, Staci L; Eldridge, Gloria D; Johnson, Mark E

    2015-10-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. © The Author(s) 2015.

  3. Untying the Gordian knot: policies, practices, and ethical issues related to banking of umbilical cord blood

    PubMed Central

    Kurtzberg, Joanne; Lyerly, Anne Drapkin; Sugarman, Jeremy

    2005-01-01

    Since the first successful transplantation of umbilical cord blood in 1988, cord blood has become an important source of hematopoietic stem and progenitor cells for the treatment of blood and genetic disorders. Significant progress has been accompanied by challenges for scientists, ethicists, and health policy makers. With the recent recognition of the need for a national system for the collection, banking, distribution, and use of cord blood and the increasing focus on cord blood as an alternative to embryos as a source of tissue for regenerative medicine, cord blood has garnered significant attention. We review the development of cord blood banking and transplantation and then discuss the scientific and ethical issues influencing both established and investigational practices surrounding cord blood collection, banking, and use. PMID:16200191

  4. The Global Governance of Bioethics: Negotiating UNESCO's Universal Declaration on Bioethics and Human Rights (2005).

    PubMed

    Langlois, Adèle

    2011-01-01

    UNESCO's Universal Declaration on Bioethics and Human Rights (2005) was drawn up by an independent panel of experts (the International Bioethics Committee) and negotiated by member states. UNESCO aimed for a participatory and transparent drafting process, holding national and regional consultations and seeking the views of various interest groups, including religious and spiritual ones. Furthermore, reflecting UNESCO's broad interpretation of bioethics, the IBC included medics, scientists, lawyers and philosophers among its membership. Nevertheless, several potential stakeholders-academic scientists and ethicists, government policy-makers and NGO representatives-felt they had not been sufficiently consulted or even represented during the Declaration's development. Better communications and understanding within and between national, regional and international layers of governance would help to avoid a recurrence of this problem in future negotiations.

  5. Amenable to reason: Aristotle's rhetoric and the moral psychology of practical ethics.

    PubMed

    London, A J

    2000-12-01

    An Aristotelian conception of practical ethics can be derived from the account of practical reasoning that Aristotle articulates in is Rhetoric and this has important implications for the way we understand the nature and limits of practical ethics. an important feature of this conception of practical ethics is its responsiveness to the complex ways in which agents form and maintain moral commitments, and this has important implications for the debate concerning methods of ethics in applied ethics. In particular, this feature enables us to understand casuistry, narrative, and principlism as mutually supportive modes of moral inquiry, rather than divergent and mutually exclusive methods of ethics. As a result, an Aristotelian conception of practical ethics clears the conceptual common ground upon which practical ethicists can forge a stable and realistic self-understanding.

  6. Fatherhood, childism, and the creation of society.

    PubMed

    Wall, John

    2007-01-01

    This essay argues for a new religious ethical approach to fatherhood centered on children and their expanding capabilities for participation in society. Under the notion of "childism"—in analogy to feminism, womanism, humanism, and the like—it takes the perspective of the experiences and concerns of childhood as such. In contrast with a soft patriarchal argument for fatherhood that dominates much religious discourse today, it argues for a larger and more hopeful vision of fatherhood as directed toward the human social good. This requires, methodologically, a richer hermeneutical circle between religion and the social sciences. Substantively, it calls for Christian and other religious ethicists to re-imagine fatherhood as an integrated public–private responsibility that aims to cultivate children’s fully human social creativity as images of their Creator.

  7. Attitudes toward surrogate motherhood in Canada.

    PubMed

    Krishnan, V

    1994-01-01

    The issue of surrogate motherhood captured worldwide attention with the Baby M case in the United States. Some medical practitioners now claim that the surrogate arrangement may be the answer for certain women who are unable to conceive children naturally. Feminist activists are highly critical about the issue. In her landmark book The Mother Machine, Corea (1985) called surrogates "breeders," women whose bodies are being used by men. Lawyers and ethicists debate whether surrogacy is baby selling or not, and religious fundamentalists have condemned any form of procreation outside the "normal" or "natural" form of sexual relations within a marriage. But what do Canadian women think about commercial surrogacy? Findings pertaining to this issue from the latest national fertility survey of 5,315 women in the reproductive ages of 18-49 are reported.

  8. Responsibility and age-related dementia.

    PubMed

    Frantik, Petr

    2018-05-01

    This article identifies the assumption of responsibility as a basic need of human beings and applies the concept specifically to older people with dementia or Alzheimer's disease. It suggests a two-level concept of responsibility, based on the approach of discourse ethicist Karl-Otto Apel, as a promising approach to recognizing human diversity while at the same time respecting people's equal rights to participate in discourse. This concept can serve as a theoretical starting point for the construction of individually adapted types of responsibility. Furthermore, the article describes practical ideas (primarily the practice of doll therapy) that can enable people with dementia or Alzheimer's disease to assume responsibility. Direct communication and a reflective, sensitive consideration of each individual case are identified as important prerequisites for the inclusion of elderly people with dementia. © 2018 John Wiley & Sons Ltd.

  9. Governance of dual-use research: an ethical dilemma

    PubMed Central

    2009-01-01

    Abstract Scenarios where the results of well-intentioned scientific research can be used for both good and harmful purposes give rise to what is now widely known as the “dual-use dilemma”. There has been growing debate about the dual-use nature of life science research with implications for making biological weapons. This paper reviews several controversial publications that have been the focus of debates about dual-use life science research and critically examines relevant policy developments, particularly in the United States of America. Though the dual-use dilemma is inherently ethical in nature, the majority of debates about dual-use research have primarily involved science and security experts rather than ethicists. It is important that there is more ethical input into debates about the governance of dual-use research. PMID:19784453

  10. Protecting Your Patients' Interests in the Era of Big Data, Artificial Intelligence, and Predictive Analytics.

    PubMed

    Balthazar, Patricia; Harri, Peter; Prater, Adam; Safdar, Nabile M

    2018-03-01

    The Hippocratic oath and the Belmont report articulate foundational principles for how physicians interact with patients and research subjects. The increasing use of big data and artificial intelligence techniques demands a re-examination of these principles in light of the potential issues surrounding privacy, confidentiality, data ownership, informed consent, epistemology, and inequities. Patients have strong opinions about these issues. Radiologists have a fiduciary responsibility to protect the interest of their patients. As such, the community of radiology leaders, ethicists, and informaticists must have a conversation about the appropriate way to deal with these issues and help lead the way in developing capabilities in the most just, ethical manner possible. Copyright © 2017 American College of Radiology. Published by Elsevier Inc. All rights reserved.

  11. Outcomes of Moral Case Deliberation - the development of an evaluation instrument for clinical ethics support (the Euro-MCD)

    PubMed Central

    2014-01-01

    Background Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers’ experiences and perceived importance of outcomes of Moral Case Deliberation. Methods A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through ‘think-aloud’ interviews and a method using Content Validity Index. Results The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant’s first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results. Conclusions A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study. PMID:24712735

  12. Outcomes of moral case deliberation--the development of an evaluation instrument for clinical ethics support (the Euro-MCD).

    PubMed

    Svantesson, Mia; Karlsson, Jan; Boitte, Pierre; Schildman, Jan; Dauwerse, Linda; Widdershoven, Guy; Pedersen, Reidar; Huisman, Martijn; Molewijk, Bert

    2014-04-08

    Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers' experiences and perceived importance of outcomes of Moral Case Deliberation. A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through 'think-aloud' interviews and a method using Content Validity Index. The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant's first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results. A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study.

  13. Systematic and transparent inclusion of ethical issues and recommendations in clinical practice guidelines: a six-step approach.

    PubMed

    Mertz, Marcel; Strech, Daniel

    2014-12-04

    Clinical practice guidelines (CPGs), a core tool to foster medical professionalism, differ widely in whether and how they address disease-specific ethical issues (DSEIs), and current manuals for CPG development are silent on this issue. The implementation of an explicit method faces two core challenges: first, it adds further complexity to CPG development and requires human and financial resources. Second, in contrast to the in-depth treatment of ethical issues that is standard in bioethics, the inclusion of DSEIs in CPGs need to be more pragmatic, reductive, and simplistic, but without rendering the resulting recommendations useless or insufficiently justified. This paper outlines a six-step approach, EthicsGuide, for the systematic and transparent inclusion of ethical issues and recommendations in CPGs. The development of EthicsGuide is based on (a) methodological standards in evidence-based CPG development, (b) principles of bioethics, (c) research findings on how DSEIs are currently addressed in CPGs, and (d) findings from two proof-of-concept analyses of the EthicsGuide approach. The six steps are 1) determine the DSEI spectrum and the need for ethical recommendations; 2) develop statements on which to base ethical recommendations; 3) categorize, classify, condense, and paraphrase the statements; 4) write recommendations in a standard form; 5) validate and justify recommendations, making any necessary modifications; and 6) address consent. All six steps necessarily come into play when including DSEIs in CPGs. If DSEIs are not explicitly addressed, they are unavoidably dealt with implicitly. We believe that as ethicists gain greater involvement in decision-making about health, personal rights, or economic issues, they should make their methods transparent and replicable by other researchers; and as ethical issues become more widely reflected in CPGs, CPG developers have to learn how to address them in a methodologically adequate way. The approach proposed should serve as a basis for further discussion on how to reach these goals. It breaks open the black box of what ethicists implicitly do when they develop recommendations. Further, interdisciplinary discussion and pilot tests are needed to explore the minimal requirements that guarantee a simplified procedure which is still acceptable and does not become mere window dressing.

  14. Developing a Framework for Evaluating Ethical Outcomes of Good Participatory Practices in TB Clinical Drug Trials.

    PubMed

    MacQueen, Kathleen M; Eley, Natalie T; Frick, Mike; Mingote, Laia Ruiz; Chou, Alicia; Seidel, Stephanie S; Hannah, Stacey; Hamilton, Carol

    2016-07-01

    Good Participatory Practice Guidelines for TB Drug Trials (GPP-TB) were issued in 2012, based on similar guidelines for HIV prevention and reflecting growing acceptance of the importance of community engagement and participatory strategies in clinical research. Though the need for such strategies is clear, evaluation of the benefits and burdens are needed. Working with a diverse group of global TB stakeholders including advocates, scientists, and ethicists, we used a Theory of Change approach to develop an evaluation framework for GPP-TB that includes a clearly defined ethical goal, a set of powerful strategies derived from GPP-TB practices for achieving the goal, and outcomes connecting strategies to goal. The framework is a first step in systematically evaluating participatory research in clinical trials. © The Author(s) 2016.

  15. Advance directives and personal identity: what is the problem?

    PubMed

    Furberg, Elisabeth

    2012-02-01

    The personal identity problem expresses the worry that due to disrupted psychological continuity, one person's advance directive could be used to determine the care of a different person. Even ethicists, who strongly question the possibility of the scenario depicted by the proponents of the personal identity problem, often consider it to be a very potent objection to the use of advance directives. Aiming to question this assumption, I, in this paper, discuss the personal identity problem's relevance to the moral force of advance directives. By putting the personal identity argument in relation to two different normative frameworks, I aim to show that whether or not the personal identity problem is relevant to the moral force of advance directives, and further, in what way it is relevant, depends entirely on what normative reasons we have for respecting advance directives in the first place.

  16. Decreasing Smoking but Increasing Stigma? Anti-tobacco Campaigns, Public Health, and Cancer Care

    PubMed Central

    Riley, Kristen E.; Ulrich, Michael R.; Hamann, Heidi A.; Ostroff, Jamie S.

    2017-01-01

    Public health researchers, mental health clinicians, philosophers, and medical ethicists have questioned whether the public health benefits of large-scale anti-tobacco campaigns are justified in light of the potential for exacerbating stigma toward patients diagnosed with lung cancer. Although there is strong evidence for the public health benefits of anti-tobacco campaigns, there is a growing appreciation for the need to better attend to the unintended consequence of lung cancer stigma. We argue that there is an ethical burden for creators of public health campaigns to consider lung cancer stigma in the development and dissemination of hard-hitting anti-tobacco campaigns. We also contend that health care professionals have an ethical responsibility to try to mitigate stigmatizing messages of public health campaigns with empathic patient-clinician communication during clinical encounters. PMID:28553905

  17. Towards improving the ethics of ecological research.

    PubMed

    Crozier, G K D; Schulte-Hostedde, Albrecht I

    2015-06-01

    We argue that the ecological research community should develop a plan for improving the ethical consistency and moral robustness of the field. We propose a particular ethics strategy--specifically, an ongoing process of collective ethical reflection that the community of ecological researchers, with the cooperation of applied ethicists and philosophers of biology, can use to address the needs we identify. We suggest a particular set of conceptual (in the form of six core values--freedom, fairness, well being, replacement, reduction, and refinement) and analytic (in the forms of decision theoretic software, 1000Minds) tools that, we argue, collectively have the resources to provide an empirically grounded and conceptually complete foundation for an ethics strategy for ecological research. We illustrate our argument with information gathered from a survey of ecologists conducted at the 2013 meeting of the Canadian Society of Ecology and Evolution.

  18. The ethics of using cybernetics and cyborg technologies: what every rehabilitation nurse should know.

    PubMed

    Moore, Linda Weaver; Rieg, Linda S

    2005-01-01

    Cybernetics and cyborg technologies are rapidly developing in the field of biotechnology. Such developments have yielded a wide variety of devices and prosthetics that have promoted the quality of life for many individuals with physical limitations and generally have been applauded by society and the rehabilitation field. However, such rapid developments have given rise to multiple ethical concerns. Understanding these ethical concerns and the implications they have for rehabilitation nurses is imperative. While the potential benefits of advances in technology are great for those with disabilities and chronic conditions, ethicists suggest that skepticism must be balanced with the zeal that often accompanies cutting-edge developments. As Hook notes, "We must show not a fear of technology, but a courageous control of technology, and refuse to let technology control us" (2002, p. 67).

  19. Philosophy as news: bioethics, journalism and public policy.

    PubMed

    Goodman, K W

    1999-04-01

    News media accounts of issues in bioethics gain significance to the extent that the media influence public policy and inform personal decision making. The increasingly frequent appearance of bioethics in the news thus imposes responsibilities on journalists and their sources. These responsibilities are identified and discussed, as is (i) the concept of "news-worthiness" as applied to bioethics, (ii) the variable quality of bioethics reportage and (iii) journalists' reliance on ethicists to pass judgment. Because of the potential social and other benefits of high quality reporting on ethical issues, it is argued that journalists and their bioethics sources should explore and accommodate more productive relationships. An optimal journalism-ethics relationship will be one characterized by "para-ethics," in which journalistic constraints are noted but also in which issues and arguments are presented without oversimplification and credible disagreement is given appropriate attention.

  20. The Global Governance of Bioethics: Negotiating UNESCO’s Universal Declaration on Bioethics and Human Rights (2005)

    PubMed Central

    Langlois, Adèle

    2012-01-01

    UNESCO’s Universal Declaration on Bioethics and Human Rights (2005) was drawn up by an independent panel of experts (the International Bioethics Committee) and negotiated by member states. UNESCO aimed for a participatory and transparent drafting process, holding national and regional consultations and seeking the views of various interest groups, including religious and spiritual ones. Furthermore, reflecting UNESCO’s broad interpretation of bioethics, the IBC included medics, scientists, lawyers and philosophers among its membership. Nevertheless, several potential stakeholders—academic scientists and ethicists, government policy-makers and NGO representatives—felt they had not been sufficiently consulted or even represented during the Declaration’s development. Better communications and understanding within and between national, regional and international layers of governance would help to avoid a recurrence of this problem in future negotiations. PMID:22724045

  1. Islamic perspective on human cloning and stem cell research.

    PubMed

    Larijani, B; Zahedi, F

    2004-12-01

    Recent advances in the field of cloning and stem cell research have introduced new hope for treatment of serious diseases. But this promise has been accompanied by enormous questions. Currently, cloning is a matter of public discussion. It is rare that a field of science causes debate and challenge not only among scientists but also among ethicists, religious scholars, governments, and politicians. One important concern is religious arguments. Various religions have different attitudes toward the morality of these subjects; even within a particular religious tradition there is a diversity of opinions. The following article briefly reviews Islamic perspectives about reproductive/therapeutic cloning and stem cell research. The majority of Muslim jurists distinguish between reproductive and therapeutic cloning. The moral status of the human embryo, the most sensitive and disputed point in this debate, is also discussed according to Holy Quran teachings.

  2. Bedside resource stewardship in disasters: a provider's dilemma practicing in an ethical gap.

    PubMed

    Daniel, Michelle

    2012-01-01

    During disasters, clinicians may be forced to play dual roles, as both a provider and an allocator of scarce resources. At present, a clear framework to govern resource stewardship at the bedside is lacking. Clinicians who find themselves practicing in this ethical gap between clinical and public health ethics can experience significant moral distress. One provider describes her experience allocating an oxygen tank in the intensive care unit at a hospital in Port-au-Prince, Haiti, immediately following the 2010 earthquake. Using a clinical vignette and reflective narrative she attempts to identify the factors that influenced her allocation decision, opening up the factors for commentary and debate by an ethicist. A better paradigm for the ethical care of patients during disasters is needed to better guide provider choices in the future.

  3. Resource allocation. The cost of care: two troublesome cases in health care ethics.

    PubMed

    Armstrong, C R; Whitlock, R

    1998-01-01

    With the cost of health care rising rapidly, both physicians and administrators regularly face resource allocation decisions. Under these conditions of relative scarcity, the equitable and appropriate distribution of limited resources becomes an ethical as well as a financial issue. Through ethical analysis, physician executives can assist their physician colleagues and fellow administrators to find rationally defensible answers to questions regarding the distribution of limited resources. Six criteria are frequently "weighted in the balance" by ethicists when analyzing whether justice is served in the distribution of a limited resource: need, equality, contribution, ability to pay, effort, and merit. The authors argue that, from an ethical standpoint, the best single criterion upon which one can base an allocation decision is that of merit, defined as the potential to benefit from the investment of additional resources.

  4. Transplanting the Body: Preliminary Ethical Considerations.

    PubMed

    Miller, Lantz Fleming

    2017-11-01

    A dissociated area of medical research warrants bioethical consideration: a proposed transplantation of a donor's entire body, except head, to a patient with a fatal degenerative disease. The seeming improbability of such an operation can only underscore the need for thorough bioethical assessment: Not assessing a case of such potential ethical import, by showing neglect instead of facing the issue, can only compound the ethical predicament, perhaps eroding public trust in ethical medicine. This article discusses the historical background of full-body transplantation, documents the seriousness of its current pursuit, and builds an argument for why prima facie this type of transplant is bioethically distinct. Certainly, this examination can only be preliminary, indicating what should be a wide and vigorous discussion among practitioners and ethicists. It concludes with practical suggestions for how the medical and bioethics community may proceed with ethical assessment.

  5. Enhancement: are ethicists excessively influenced by baseless speculations?

    PubMed

    Jones, D G

    2006-12-01

    Most commentators draw a sharp distinction between therapy and enhancement, applauding therapy and rejecting enhancement. Not only is this distinction unclear but enhancement is often seen in grandiose terms in which human beings are radically transformed. Such far-reaching visions are then used to reject current procedures such as pre-implantation genetic diagnosis. To overcome this highly problematic impasse, enhancement has been divided into three categories, ranging from the health-related enhancement of category 1, through the non-health-related enhancement of category 2, to the transhumanism or posthumanism of category 3. Arguably, most enhancements are of the category 1 variety, and hence closely related to treatment. Also, we are already enhanced, when compared with our forebears. It is only when we accept this and dispense with baseless speculation will we be in a position to conduct ethical discussions within a realistic framework.

  6. Concerns raised about Botswana's proposed HIV-disclosure law.

    PubMed

    Ahmad, K

    2000-08-19

    On August 10, 2000, Botswana's Minister for Health, Joy Phumaphi, announced that the country is considering legislation making disclosure of one's HIV status to a sex partner mandatory. The legislation would make sexual activity without information a criminal offense. However, Phumaphi's statement has created worldwide concern. Ethicists Anna Mastroianni of the University of Washington and Jeffrey Kahn of the University of Minnesota argue that such a policy, if enacted, would further increase the spread of HIV/AIDS because people would not present for HIV testing. Moreover, Josef Decosas of the Southern Africa AIDS Training Programme, Harare, Zimbabwe adds that such legislation would disempower women and be used to criminalize prostitution and drive the industry further underground. He rather recommends regular access to sexual health care services and intensive support for consistent condom use in containing HIV epidemic in Botswana.

  7. Virtue ethics, positive psychology, and a new model of science and engineering ethics education.

    PubMed

    Han, Hyemin

    2015-04-01

    This essay develops a new conceptual framework of science and engineering ethics education based on virtue ethics and positive psychology. Virtue ethicists and positive psychologists have argued that current rule-based moral philosophy, psychology, and education cannot effectively promote students' moral motivation for actual moral behavior and may even lead to negative outcomes, such as moral schizophrenia. They have suggested that their own theoretical framework of virtue ethics and positive psychology can contribute to the effective promotion of motivation for self-improvement by connecting the notion of morality and eudaimonic happiness. Thus this essay attempts to apply virtue ethics and positive psychology to science and engineering ethics education and to develop a new conceptual framework for more effective education. In addition to the conceptual-level work, this essay suggests two possible educational methods: moral modeling and involvement in actual moral activity in science and engineering ethics classes, based on the conceptual framework.

  8. Human cloning, stem cell research. An Islamic perspective.

    PubMed

    Al-Aqeel, Aida I

    2009-12-01

    The rapidly changing technologies that involve human subjects raise complex ethical, legal, social, and religious issues. Recent advances in the field of cloning and stem cell research have introduced new hopes for the treatment of serious diseases. But this promise has raised many complex questions. This field causes debate and challenge, not only among scientists but also among ethicists, religious scholars, governments, and politicians. There is no consensus on the morality of human cloning, even within specific religious traditions. In countries in which religion has a strong influence on political decision making, the moral status of the human embryo is at the center of the debate. Because of the inevitable consequences of reproductive cloning, it is prohibited in Islam. However, stem cell research for therapeutic purposes is permissible with full consideration, and all possible precautions in the pre-ensoulment stages of early fetus development, if the source is legitimate.

  9. Gender identity in disorders of sex development: review article.

    PubMed

    Yang, Jennifer H; Baskin, Laurence S; DiSandro, Michael

    2010-01-01

    Many concerns have been raised regarding the treatment and long-term outcome of infants born with complex genital anomalies. Debate among clinicians, psychologists, ethicists, and patient advocate groups regarding the optimal management of these individuals is ongoing. Although determining the most appropriate gender is a difficult task, this review will help clarify some of the issues at hand. A literature review which addresses the challenges of advising families about gender identity in infants and children with disorders of sex development. The evidence for endocrine effects on neurobiological development with regard to sexual behavior is compelling, although the existing outcome studies are largely anecdotal and somewhat contradictory. Gender assignment in infants born with a disorder of sex development remains only one of the many difficult decisions faced by both the treatment team and the family. Improved long-term follow-up of these patients will provide much needed feedback on previous and contemporary management. 2010 Elsevier Inc. All rights reserved.

  10. Scientific Research and the Public Trust

    PubMed Central

    Resnik, David B.

    2011-01-01

    This essay analyzes the concept of public trust in science and offers some guidance for ethicists, scientists, and policymakers who use this idea defend ethical rules or policies pertaining to the conduct of research. While the notion the public trusts science makes sense in the abstract, it may not be sufficiently focused to support the various rules and policies that authors have tried to derive from it, because the public is not a uniform body with a common set of interests. Well-focused arguments that use public trust to support rules or policies for the conduct of research should specify a) which public is being referred to (e.g. the general public or a specific public, such as a particular community or group); b) what this public expects from scientists; c) how the rule or policy will ensure that these expectations are met; and d) why is it important to meet these expectations. PMID:20803259

  11. Scientific research and the public trust.

    PubMed

    Resnik, David B

    2011-09-01

    This essay analyzes the concept of public trust in science and offers some guidance for ethicists, scientists, and policymakers who use this idea defend ethical rules or policies pertaining to the conduct of research. While the notion that public trusts science makes sense in the abstract, it may not be sufficiently focused to support the various rules and policies that authors have tried to derive from it, because the public is not a uniform body with a common set of interests. Well-focused arguments that use public trust to support rules or policies for the conduct of research should specify (a) which public is being referred to (e.g. the general public or a specific public, such as a particular community or group); (b) what this public expects from scientists; (c) how the rule or policy will ensure that these expectations are met; and (d) why is it important to meet these expectations.

  12. Absent virtues: the poacher becomes gamekeeper.

    PubMed

    Koch, T

    2003-12-01

    Since its inception, bioethics' principled stance has been to argue against paternalism and elitism, and for an inclusive ethical perspective. But at least in North America, the growth of bioethics as a special area of applied ethics has created conflicts within the field itself. Those who, a generation earlier, argued against paternalism and for both professional and public accountability in medical decision making are now part of the decision making process. Too often, it is argued in this paper, their allegiance is to the employer, or to a view of medicine that is institutionally based. As a result, it is suggested by this review, medical ethicists have adopted the perspective that, in the early 1970s, they most criticised. The answer, it is argued here, is to revisit a lexicographical ordering of responsibility in bioethics, one that recognises professionals as individuals with responsibilities, as citizens with a public posture, and finally, as professionals involved in the process of medical decision making.

  13. Ethics and public health emergencies: rationing vaccines.

    PubMed

    Wynia, Matthew K

    2006-01-01

    There are three broad ethical issues related to handling public health emergencies. They are the three R's-rationing, restrictions and responsibilities. Recently, a severe shortage of annual influenza vaccine in the US, combined with the threat of pandemic flu, has provided an opportunity for policy makers to think about rationing in very concrete terms. Some lessons from annual flu vaccination likely will apply to pandemic vaccine distribution, but many preparatory decisions must be based on very rough estimates. What ethical principles should guide rationing decisions, what data should inform these decisions, how to revise decisions as new data emerge, and how to implement rationing decisions on the ground are all important considerations. In addition, ethicists might be able to help policy makers think through the importance of international cooperation in surmounting global rationing dilemmas and to accept the inevitable responsibilities of government in making and implementing rationing decisions.

  14. Artificial persons against nature: environmental governmentality, economic corporations, and ecological ethics.

    PubMed

    Northcott, Michael S

    2012-02-01

    Despite the 194 nation-state signatories to the global Convention on Biological Diversity, the conservation effort is failing to halt an ongoing spiral of decline in most habitats and ecological communities on land and ocean. Environmental ethicists argue that the failure to halt the unsustainable predation on the ecosystems that sustain industrial civilization is indicative of a moral as well as a scientific crisis. Principal ethical interventions in ecology include the ascription of value to species and ecosystems, wilderness ethics, and ecological virtue. Ecological virtue ethics identifies agency, character, institutions, and practices as crucial to moral formation and outcomes. However, the dominant role of the economic corporation in ecological destruction subverts a virtues approach. Corporations as fictive persons will not learn ecological virtue absent of legal and regulatory reform and the ecological education of business leaders and owners. © 2012 New York Academy of Sciences.

  15. End-of-life ethics and disability: differing perspectives on case-based teaching.

    PubMed

    Kaufert, Joseph; Wiebe, Rhonda; Schwartz, Karen; Labine, Lisa; Lutfiyya, Zana Marie; Pearse, Catherine

    2010-05-01

    The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals.

  16. A new rejection of moral expertise.

    PubMed

    Cowley, Christopher

    2005-01-01

    There seem to be two clearly-defined camps in the debate over the problem of moral expertise. On the one hand are the "Professionals", who reject the possibility entirely, usually because of the intractable diversity of ethical beliefs. On the other hand are the "Ethicists", who criticise the Professionals for merely stipulating science as the most appropriate paradigm for discussions of expertise. While the subject matter and methodology of good ethical thinking is certainly different from that of good clinical thinking, they argue, this is no reason for rejecting the possibility of a distinctive kind of expertise in ethics, usually based on the idea of good justification. I want to argue that both are incorrect, partly because of the reasons given by one group against the other, but more importantly because both neglect what is most distinctive about ethics: that it is personal in a very specific way, without collapsing into relativism.

  17. The role of older people in our communities.

    PubMed

    Shotton, Leila

    2003-01-01

    The proportion of older people in the total population is increasing in most countries because of advances in medical technology and resulting longer life expectancy. The role that older people play in our communities does not reflect this. Sometimes they are reduced to mere statistics and stereotypes in economic and political discussions on the financial burdens of care for older people. I argue that we need to rebuild inclusive munities in which older people are respected as valuable members. I suggest that this can be done by studying the characteristics of past communities and by learning from the work of environmental ethicists who advocate the preservation of our heritage. Nurses share with them a holistic perspective on complex issues such as ageing. They are therefore in a position to empower older people to play a role in our communities as unique individuals with integrity and wisdom.

  18. ELSI Priorities for Brain Imaging

    PubMed Central

    Illes, Judy; De Vries, Raymond; Cho, Mildred K.; Schraedley-Desmond, Pam

    2006-01-01

    As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier. PMID:16500831

  19. Duties to kin through a tragi-comic lens.

    PubMed

    Gillett, Grant; Hankey, Robin

    2014-06-01

    Euripides' Alcestis (1959) raises the issue of ethical duties within families and exposes the romantic postures and rhetoric that can dominate such discussions. Should anybody be asked to sacrifice themselves or even undergo significant health risks for members of their own family? (An issue that is also relevant in considering our duties to future generations in terms of the earth we leave to them.) The issue that is dramatized to a heroic level in Alcestis arises in live organ and tissue donation within a family and challenges the idea that families should be trusted to sort out solutions that they can all live with. Alcestis intensifies the debate because the sacrifice of one life for another is its topic but, in doing so, it exposes many traps lying in wait for ethicists and medical jurists who boldly enter such debates (where emotions create shifting ground on which angels fear to tread).

  20. The role of ethics in commercial genetic research: notes on the notion of commodification.

    PubMed

    Hoeyer, Klaus

    2005-01-01

    The emergence of exchange systems for new bodily entities such as organs, cell lines, and tissue samples has generated increasing ethical concern. Concurrently, the role of ethics is becoming contested. Some social scientists have sought to reveal ethics policies as veils for commercial exploitation, masking the crude commodification of the human body. Other social scientists and ethicists have attempted to carve out a role for ethics as a defense against such, presumably violent, market forces. This article seeks an alternative rout. In analyzing the commercialization of a particular Swedish biobank, it suggests that we are in fact witnessing a process of decommodification and that ethics policies do indeed play a central role in this. However, concomitantly, ethics can be seen to veil the commodification not of bodily entities but, rather, of research results. When approaching these processes it is suggested that we analyze the interrelatedness of moral reasoning and forms of exchange.

  1. Moral Expertise in the Clinic: Lessons Learned from Medicine and Science

    PubMed Central

    McClimans, Leah; Slowther, Anne

    2016-01-01

    Philosophers and others have questioned whether or not expertise in morality is possible. This debate is not only theoretical, but also affects the perceived legitimacy of clinical ethicists. One argument against moral expertise is that in a pluralistic society with competing moral theories no one can claim expertise regarding what another ought morally to do. There are simply too many reasonable moral values and intuitions that affect theory choice and its application; expertise is epistemically uniform. In this article, we discuss how similar concerns have recently threatened to undermine expertise in medicine and science. In contrast, we argue that the application of values is needed to exercise medical, scientific, and moral expertise. As long as these values are made explicit, worries about a pretense to authority in the context of a liberal democracy are ill-conceived. In conclusion, we argue for an expertise that is epistemically diverse. PMID:27302969

  2. Psychological opportunities and hazards in predictive genetic testing for cancer risk.

    PubMed

    Codori, A M

    1997-03-01

    Although the availability of genetic tests seems like an unequivocally favorable turn of events, they are, in fact, not without controversy. At the center of the controversy is a question regarding the risks and benefits of genetic testing. Many geneticists, ethicists, psychologists, and persons at risk for cancer are concerned about the potentially adverse psychological effects of genetic testing on tested persons and their families. In addition, the screening and interventions that are useful in the general population remain to be shown effective in those with high genetic cancer risk. Consequently, there have been calls for caution in moving genetic testing out of research laboratories and into commercial laboratories until their impact and the effectiveness of cancer prevention strategies can be studied. This article examines the arguments and data for and against this caution, citing examples related to hereditary nonpolyposis colon cancer and drawing upon literature on testing for other genetic diseases.

  3. Ethical androcentrism and maternal substance addiction.

    PubMed

    Parks, J A

    1999-01-01

    In this paper, I argue that bioethics suffers from a masculinist approach--what I call "ethical androcentrism." Despite the genesis of other legitimate approaches to ethics (such as feminist, narrative, and communicative ethics), this masculinist tradition persists. The first part of my paper concerns the problem of ethical androcentrism, and how it is manifest in our typical ways of "doing" bioethics (as teachers, ethicists, policymakers, and medical practitioners). After arguing that bioethics suffers from a masculinist ethic, I consider the case of maternal substance addiction to show how this ethic negatively affects the treatment of pregnant addicts. I argue that by treatment maternal substance addiction from an androcentric approach, we fail to serve both pregnant addicts and their fetuses; furthermore, we misrepresent the intentional state of pregnant substance addicts and label them "prenatal abusers." If maternal substance addiction is to be ethically addressed--and if pregnant substance addicts are to be effectively treated--we cannot tacitly accept an androcentric ethic.

  4. [Chances and limitations of patients' advance decisions at the end of life].

    PubMed

    Bauer, Axel W

    2009-01-01

    Death by "natural" causes is not appreciated in Western industrialized countries because it may be regarded as an obstacle against performance and consumption. In addition, life-saving therapies for patients with an infaust prognosis are often rather expensive and therefore classified as "futile". Utilitarian measures for the individual's quality of life (QALY's), which are allegedly objective, veil the fact that they can only reflect the parameters that have been considered during their construction. Caused by fear of a life in the nursing home, which is partially intensified by the media, many ethicists and lawyers propagate anticipating models of retaining patients' autonomy at the end of life. Apart from general considerations published by the former National Ethics Council in 2005, the German Parliament in 2009 will have to discuss three different bills concerning patients' advance decisions to refuse medical treatment. The illusion of "autonomous dying" is not a convincing model for the end of life debate.

  5. Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy.

    PubMed

    Ubel, Peter A; Scherr, Karen A; Fagerlin, Angela

    2017-11-01

    Many health care decisions depend not only upon medical facts, but also on value judgments-patient goals and preferences. Until recent decades, patients relied on doctors to tell them what to do. Then ethicists and others convinced clinicians to adopt a paradigm shift in medical practice, to recognize patient autonomy, by orienting decision making toward the unique goals of individual patients. Unfortunately, current medical practice often falls short of empowering patients. In this article, we reflect on whether the current state of medical decision making effectively promotes patients' health care goals. We base our reflections, in part, on research in which we observed physicians making earnest efforts to partner with patients in making treatment decisions, but still struggling to empower patients-failing to communicate clearly to patients about decision-relevant information, overwhelming patients with irrelevant information, overlooking when patients' emotions made it hard to engage in choices, and making recommendations before discussing patients' goals.

  6. Keeping it Ethically Real

    PubMed Central

    Ho, Dien

    2016-01-01

    Many clinical ethicists have argued that ethics expertise is impossible. Their skeptical argument usually rests on the assumptions that to be an ethics expert is to know the correct moral conclusions, which can only be arrived at by having the correct ethical theories. In this paper, I argue that this skeptical argument is unsound. To wit, ordinary ethical deliberations do not require the appeal to ethical or meta-ethical theories. Instead, by agreeing to resolve moral differences by appealing to reasons, the participants agree to the Default Principle—a substantive rule that tells us how to adjudicate an ethical disagreement. The Default Principle also entails a commitment to arguments by parity, and together these two methodological approaches allow us to make genuine moral progress without assuming any deep ethical principles. Ethical expertise, in one sense, is thus the ability and knowledge to deploy the Default Principle and arguments by parity. PMID:27256847

  7. Between the bench, the bedside and the office: The need to build bridges between working neuroscientists and ethicists.

    PubMed

    Brosnan, Caragh; Cribb, Alan

    2014-12-01

    This paper presents findings from an empirical study that explored the meaning of ethics in the everyday work of neuroscientists. Observation and interviews were carried out in one neuroscience research group that was involved in bench-to-bedside translational research. We focus here specifically on the scientists' perceptions of bioethics. Interviewees were often unfamiliar with bioethics as a discipline, particularly the more junior members of the group. Those who were aware of its existence largely viewed it as something distant from them, and as either too abstract, not relevant or an alien imposition on their work. Some interviewees themselves pointed to the need for better 'bridge building' between ethical principles and real-world examples drawn from scientific practice, and we argue that this space is where a more empirically grounded ethics may be useful in terms of actually engaging scientists at both the bench and the bedside.

  8. A Survey of Hospital Ethics Structures in Ontario.

    PubMed

    Breslin, Jonathan

    2017-01-01

    In response to the growing recognition of the prevalence of ethical issues in clinical care, hospitals in Canada began forming ethics committees in the 1980s. Studies showed significant growth in the prevalence of ethics committees over the ensuing decade. Although the limited studies available suggest that ethics committees have become very prevalent in Canadian hospitals, hospital ethics services have evolved in recent years to include a wider range of structures. In some cases, these structures may work in conjunction with an ethics committee, but in other cases they may replace ethics committees. They include on-staff ethicists, external ethics consultants, "hub-and-spokes" structures and regional ethics programs. What is not known, however, is how prevalent these other structures are and whether ethics committees continue to function as the main delivery mechanism for ethics services in Canadian hospitals. This paper reports on the results of a survey of hospitals in Ontario to answer those questions.

  9. Ethics in practice: managed care and the changing health care environment: medicine as a profession managed care ethics working group statement.

    PubMed

    Povar, Gail J; Blumen, Helen; Daniel, John; Daub, Suzanne; Evans, Lois; Holm, Richard P; Levkovich, Natalie; McCarter, Alice O; Sabin, James; Snyder, Lois; Sulmasy, Daniel; Vaughan, Peter; Wellikson, Laurence D; Campbell, Amy

    2004-07-20

    Cost pressures and changes in the health care environment pose ethical challenges and hard choices for patients, physicians, policymakers, and society. In 2000 and 2001, the American College of Physicians, with the Harvard Pilgrim Health Care Ethics Program, convened a working group of stakeholders--patients, physicians, and managed care representatives, along with medical ethicists--to develop a statement of ethics for managed care. The group explored the impact of a changing health care environment on patient-physician relationships and how to best apply the principles of professionalism in this environment. The statement that emerged offers guidance on preserving the patient-clinician relationship, patient rights and responsibilities, confidentiality and privacy, resource allocation and stewardship, the obligation of health plans to foster an ethical environment for the delivery of care, and the clinician's responsibility to individual patients, the community, and the public health, among other issues.

  10. Beyond research: a primer for considerations on using viral metagenomics in the field and clinic.

    PubMed

    Hall, Richard J; Draper, Jenny L; Nielsen, Fiona G G; Dutilh, Bas E

    2015-01-01

    Powered by recent advances in next-generation sequencing technologies, metagenomics has already unveiled vast microbial biodiversity in a range of environments, and is increasingly being applied in clinics for difficult-to-diagnose cases. It can be tempting to suggest that metagenomics could be used as a "universal test" for all pathogens without the need to conduct lengthy serial testing using specific assays. While this is an exciting prospect, there are issues that need to be addressed before metagenomic methods can be applied with rigor as a diagnostic tool, including the potential for incidental findings, unforeseen consequences for trade and regulatory authorities, privacy and cultural issues, data sharing, and appropriate reporting of results to end-users. These issues will require consideration and discussion across a range of disciplines, with inclusion of scientists, ethicists, clinicians, diagnosticians, health practitioners, and ultimately the public. Here, we provide a primer for consideration on some of these issues.

  11. Addiction, Autonomy, and Informed Consent: On and Off the Garden Path

    PubMed Central

    Levy, Neil

    2016-01-01

    Several ethicists have argued that research trials and treatment programs that involve the provision of drugs to addicts are prima facie unethical, because addicts can’t refuse the offer of drugs and therefore can’t give informed consent to participation. In response, several people have pointed out that addiction does not cause a compulsion to use drugs. However, since we know that addiction impairs autonomy, this response is inadequate. In this paper, I advance a stronger defense of the capacity of addicts to participate in the programs envisaged. I argue that it is only in certain circumstances that addicts find themselves choosing in ways that conflict with their genuine preferences. Research and treatment programs have none of the features that characterize choices in these autonomy-undermining circumstances, and there is therefore no reason to think that addicts lack the capacity to give informed consent to these programs. PMID:26668167

  12. Translational Medicine is developing in China: a new venue for collaboration.

    PubMed

    Wang, Xiangdong; Wang, Ena; Marincola, Francesco M

    2011-01-04

    Translational Medicine is an emerging area comprising multidisciplinary Research from basic sciences to medical applications well summarized by the Bench-to-Beside concept; this entails close collaboration between clinicians and basic scientists across institutes. We further clarified that Translational Medicine should be regarded as a two-way road: Bench-to-Bedside and Bedside-to-Bench, to complement testing of novel therapeutic strategies in humans with feedback understanding of how they respond to them. It is, therefore, critical and important to define and promote Translational Medicine among clinicians, basic Researchers, biotechnologists, politicians, ethicists, sociologists, investors and coordinate these efforts among different Countries, fostering aspects germane only to this type of Research such as, as recently discussed, biotechnology entrepreneurship. Translational Medicine as an inter-disciplinary science is developing rapidly and widely and, in this article, we will place a special emphasis on China.

  13. Bioethics in popular science: evaluating the media impact of The Immortal Life of Henrietta Lacks on the biobank debate.

    PubMed

    Nisbet, Matthew C; Fahy, Declan

    2013-02-28

    The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot's 2010 bestselling book The Immortal Life of Henrietta Lacks. To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and in interviews and profiles of Skloot. We conducted a content analysis of a population of relevant English-language articles and transcripts (n = 125) produced by news organizations and publications in the U.S., Canada, Great Britain/Ireland, and Australia/New Zealand. We scored each article for the emphasis and appearance of 9 ethics-related themes. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy. The informed consent theme dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus. Other prominent themes and frames of reference focused on the welfare of the vulnerable (18.4 percent major emphasis; 36.0 percent minor emphasis), and donor compensation (19.2 percent major; 52.8 percent minor). Ethical themes that comprised a second tier of prominence included those of scientific progress, control/access, and accountability/oversight. The least prominent themes were privacy, public education, and advocacy. The book has been praised as an opportunity to elevate media discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot's book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated.

  14. Bioethics in popular science: evaluating the media impact of The Immortal Llife of Henrietta Lacks on the biobank debate

    PubMed Central

    2013-01-01

    Background The global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot’s 2010 bestselling book The Immortal Life of Henrietta Lacks. To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and in interviews and profiles of Skloot. Methods We conducted a content analysis of a population of relevant English-language articles and transcripts (n = 125) produced by news organizations and publications in the U.S., Canada, Great Britain/Ireland, and Australia/New Zealand. We scored each article for the emphasis and appearance of 9 ethics-related themes. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy. Results The informed consent theme dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus. Other prominent themes and frames of reference focused on the welfare of the vulnerable (18.4 percent major emphasis; 36.0 percent minor emphasis), and donor compensation (19.2 percent major; 52.8 percent minor). Ethical themes that comprised a second tier of prominence included those of scientific progress, control/access, and accountability/oversight. The least prominent themes were privacy, public education, and advocacy. Conclusions The book has been praised as an opportunity to elevate media discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot’s book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated. PMID:23446115

  15. Ethical dimensions of therapeutic human cloning.

    PubMed

    Reiss, Michael J

    2002-09-11

    Therapeutic human cloning has the potential significantly to reduce human suffering and enhance human happiness. This is the main ethical argument in its favour. The main ethical arguments against it centre on questions to do with the moral status of the human embryo. A subsidiary set of arguments arises from the connections between therapeutic human cloning and reproductive cloning. Most of the ethical questions concerning the status of the human embryo have long been examined in the context of abortion, though they are being re-examined in the context of genetic screening and embryo research. A consensus on such matters seems extremely unlikely to result in the near future. The current role of ethicists may not, therefore, be so much to attempt to produce a definitive answer to the question of the status of the human embryo at the very early developmental stages at which therapeutic human cloning would take place, but more to help clarify arguments and indicate the implications of particular approaches. That is what this paper seeks to do.

  16. Absent virtues: the poacher becomes gamekeeper

    PubMed Central

    Koch, T

    2003-01-01

    Since its inception, bioethics' principled stance has been to argue against paternalism and elitism, and for an inclusive ethical perspective. But at least in North America, the growth of bioethics as a special area of applied ethics has created conflicts within the field itself. Those who, a generation earlier, argued against paternalism and for both professional and public accountability in medical decision making are now part of the decision making process. Too often, it is argued in this paper, their allegiance is to the employer, or to a view of medicine that is institutionally based. As a result, it is suggested by this review, medical ethicists have adopted the perspective that, in the early 1970s, they most criticised. The answer, it is argued here, is to revisit a lexicographical ordering of responsibility in bioethics, one that recognises professionals as individuals with responsibilities, as citizens with a public posture, and finally, as professionals involved in the process of medical decision making. PMID:14662812

  17. Nanotechnology: is there a need for ethical principles?

    PubMed

    Meetoo, Danny

    Nanotechnology (NT) is concerned with materials and systems whose structures and components exhibit novel physical, chemical and biological properties due to their nanoscale size. This new scientific discipline is fast becoming a major driver of the future direction of health care and is likely to have a significant impact on society, medicine and nursing. This article demonstrates that ethical reflections lie at the heart of nursing. In contextualizing the ethics of NT, this article questions the conclusion reached by others that ethical reflections on NT lag behind its scientific developments. Instead it proposes that the ethical issues raised by NT are similar to those relating to biotechnology, considered by ethicists since the 1970s. Consequently, this article argues that a foundation of ethical reflections already exists that can be transferred to NT. Finally, this article asserts the need for nurses to be proactively involved in interdisciplinary discussions likely to extend the current ethical reflections of autonomy, non-maleficence, beneficence and justice to NT.

  18. Just-war tradition in the nuclear age: is it ever moral to push the button. Student essay

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

    Carney, J.L.

    1987-03-23

    Because of the massive destructiveness of nuclear weapons, many nuclear ethicists have asserted that their use in war is contrary to just-war traditions which have guided Western moral thought since at least the Fifth Century. This position creates a significant dilemma for US officials who must keep their fingers on the nuclear trigger as part of our national defense strategy. This essay examines the dimensions of that dilemma by reviewing the principles of the just-war tradition and applying them to modern total-war concepts. It concludes by examining three possible solutions to the dilemma, (1) deployment of a strategic defense system,more » such as that contemplated by SDI; (2) arms control; and (3) establishment of a world police authority under the auspices of the United Nations to enforce nuclear disarmament and to intervene, if necessary, to prevent a total conventional war between the great powers.« less

  19. Efficacy of the nurse ethicist in reducing moral distress: what can the NHS learn from the USA?

    PubMed

    Morley, Georgina

    Having first been introduced to nursing 30 years ago, 'moral distress' is not a new concept. Despite this, original research exploring moral distress has been largely absent from nursing literature produced in the UK, yet it has received increasing interest in the USA. Nurse researchers there have sought to explore, measure and understand moral distress. They are now beginning to develop and test ways in which the effects of moral distress can be reduced. The author of this article travelled to various institutions on the east coast of the USA to meet nurses leading the field of research into moral distress. This is the first of two interrelated articles that seek to explore the concept of moral distress. Drawing on both the author's experiences while in the USA and current literature, moral distress will be defined, its known effects described, and ways that nurses can mitigate its effects at a personal level discussed.

  20. Legal, Social, Ethical, and Medical Perspectives on the Care of the Statutory Rape Adolescent in the Emergency Department.

    PubMed

    Tsai, Shiu-Lin; Acosta, Elvira; Cardenas, Toni; Sigall, Jeremy K; Van Geem, Kevin

    2017-07-01

    Rapes involving adolescents who present to the emergency department (ED) are fraught with ethical and legal complexities and are often emotionally turbulent for patients, their families, and medical providers. Management requires a thoughtful approach from multiple standpoints, including legal, psychosocial, ethical, and medical ones. However, there is no standardized sexual assault education for emergency medicine residents, and management practices vary widely. 1,2 We present a hypothetical statutory rape case based on real cases that occurred in New York City and bring together the perspectives of an attorney on the legal parameters, two social workers on the psychosocial issues, an ethicist on the moral considerations, and a pediatric emergency physician-who is also a sexual assault forensic examiner-on the medical treatments. We aim to provide a framework for physicians to navigate issues of patient-physician privilege involving minors, privacy rules, and mandatory reporting laws. Copyright © 2016 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

  1. On the Brink of Shifting Paradigms, Molecular Systems Engineering Ethics Needs to Take a Proactive Approach.

    PubMed

    Heidari, Raheleh; Elger, Bernice S; Stutzki, Ralf

    2016-01-01

    Molecular Systems Engineering (MSE) is a paradigm shift in both engineering and life sciences. While the field is still in its infancy the perspectives of MSE in revolutionising technology is promising. MSE will offer a wide range of applications in clinical, biotechnological and engineering fields while simultaneously posing serious questions on the ethical and societal aspects of such technology. The moral and societal aspects of MSE need systematic investigation from scientific and social perspectives. In a democratic setting, the societal outcomes of MSE's cutting-edge technology need to be consulted and influenced by society itself. For this purpose MSE needs inclusive public engagement strategies that bring together the public, ethicists, scientists and policy makers for optimum flow of information that maximizes the impact of public engagement. In this report we present an MSE consortium and its ethics framework for establishing a proactive approach in the study of the ethics of MSE technology.

  2. Justice in international clinical research.

    PubMed

    Pratt, Bridget; Loff, Bebe

    2011-08-01

    Debates about justice in international clinical research problematically conflate two quite different forms of obligation. International research ethics guidelines were intended to describe how to conduct biomedical research in a just manner at the micro or clinical level (within the researcher-participant interaction) but have come to include requirements that are clearly intended to promote justice at the global level. Ethicists have also made a variety of claims regarding what international research should contribute to global justice. This paper argues that the conflation of debates about justice at the micro and macro-levels has not only resulted in the placement of obligations upon the wrong actors but has also served to exclude relevant actors from the ethical picture. Suggestions for who should properly bear macro-level obligations of justice in international clinical research are offered. The paper further contends that, unlike researchers who violate informed consent requirements, no similar type of accountability exists for obligations of global justice, even for those obligation-bearers (incorrectly) identified by current ethics guidelines. © 2010 Blackwell Publishing Ltd.

  3. Philosophical Provocation: The Lifeblood of Clinical Ethics.

    PubMed

    McCullough, Laurence B

    2017-02-01

    The daily work of the clinical ethics teacher and clinical ethics consultant falls into the routine of classifying clinical cases by ethical type and proposing ethically justified alternatives for the professionally responsible management of a specific type of case. Settling too far into this routine creates the risk of philosophical inertia, which is not good either for the clinical ethicist or for the field of clinical ethics. The antidote to this philosophical inertia and resultant blinkered vision of clinical ethics is sustained, willing exposure to philosophical provocation. The papers in this clinical ethics issue of the Journal of Medicine and Philosophy provide just such philosophical provocation related to core topics in clinical ethics: the distinction between clinical practice and clinical research; telemedicine, or medicine at a distance; illness narratives; the concept of the placebo effect; and sex reassignment. © 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.

  4. On the "pendulum" of bioethics.

    PubMed

    Petrini, C

    According to a well-known philosopher, the life of ethics was saved, at the beginning of the 1970s, by medicine. The claim is based on the consideration that the questions then being posed by medicine were actual and dramatic, forcing ethicists and philosophers to abandon their mostly useless abstract speculations. Since the early years of the new century some authors have been harsh in their criticism of bioethics, accusing it not only of not "returning the favour" to medicine but also of seriously hindering medical practice and, above all, research, by subjecting them to unnecessary constraints. Some of the more restrictive and bureaucratic regulations have been relaxed over the years, to the extent that some authors suggest that the bioethics pendulum "is taking a swing to the permissive". There are nonetheless some fundamental principles and values that do not admit of concessions. Provided these are properly guaranteed, it is appropriate to simplify overly rigid regulations (such as those concerning consent to the use of health data) and allow research to achieve potentially useful results.

  5. Neuroethics, confidentiality, and a cultural imperative in early onset Alzheimer disease: a case study with a First Nation population

    PubMed Central

    2013-01-01

    The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. PMID:24131854

  6. Empowerment in healthcare policy making: three domains of substantive controversy.

    PubMed

    Chiapperino, Luca; Tengland, Per-Anders

    2015-12-01

    This paper distinguishes between the uses of empowerment across different contexts in healthcare policy and health promotion, providing a model for the ethical and political scrutiny of those uses. We argue that the controversies currently engendered by empowerment are better understood by means of a historical distinction between two concepts of empowerment, namely, what we call the radical empowerment approach and the new wave of empowerment. Building on this distinction, we present a research agenda for ethicists and policy makers, highlighting three domains of controversy raised by the new wave of empowerment, namely: (1) the relationship between empowerment and paternalistic interferences on the part of professionals; (2) the evaluative commitment of empowerment strategies to the achievement of health-related goals; and (3) the problems arising from the emphasis on responsibility for health in recent uses of empowerment. Finally, we encourage the explicit theorisation of these moral controversies as a necessary step for the development and implementation of ethically legitimate empowerment processes.

  7. Constitutional moments in governing science and technology.

    PubMed

    Jasanoff, Sheila

    2011-12-01

    Scholars in science and technology studies (STS) have recently been called upon to advise governments on the design of procedures for public engagement. Any such instrumental function should be carried out consistently with STS's interpretive and normative obligations as a social science discipline. This article illustrates how such threefold integration can be achieved by reviewing current US participatory politics against a 70-year backdrop of tacit constitutional developments in governing science and technology. Two broad cycles of constitutional adjustment are discerned: the first enlarging the scope of state action as well as public participation, with liberalized rules of access and sympathetic judicial review; the second cutting back on the role of the state, fostering the rise of an academic-industrial complex for technology transfer, and privatizing value debates through increasing delegation to professional ethicists. New rules for public engagement in the United Sates should take account of these historical developments and seek to counteract some of the anti-democratic tendencies observable in recent decades.

  8. The beginning of human life

    PubMed Central

    2008-01-01

    Introduction The Jewish religion is characterized by a strict association between faith and practical precept. Jewish law has two sections, the written and the oral tradition. The foundation of the written law and the origin of authority is the Torah, the first five books of the Scripture. It is an expression of God’s revelation, teaching and guiding humanity. The oral laws interpret, expand, and elucidate the written Torah and behavior patterns regulate new rules and customs. The main parts of the oral law are as follows: the Mishnah, the Talmud, Post-Talmudic Codes and. Responsa Literature. Discussion Life is a process that has a beginning and an end. The consensus about the time when human life really begins is still not reached among scientists, philosophers, ethicists, sociologists and theologizes. The scientific data suggested that a single developmental moment marking the beginning of human life does not exist. Current biological perspectives on when human life begins range through fertilization, gastrulation, to birth and even after. The development of a newborn is a smoothly continuous process. Results Procreation is acknowledged in the Bible to be the gift of God. The (Halachic) Jewish interpretation of when human life begins is extracted predominantly from procreation is acknowledged in the Bible to be the gift of God. The Jewish interpretation of when human life begins is extracted predominantly from The Halachic sources. The Bible does not make any other direct references regarding the beginning of human life. Conclusion While the Talmud gives the full status of humanness to a child at birth, the rabbinical writings have partially extended the acquisition of humanness to the 13th postnatal day of life for full-term infants. The Babylonian Talmud Yevamot 69b states that: “the embryo is considered to be mere water until the fortieth day.” Afterwards, it is considered subhuman until it is born. The issues of abortion, embryo research, multifetal reduction and cloning will be discussed according to Jewish Law perspectives. Life is a process that has a beginning and an end. The consensus about the time when human life really begins is still not reached among scientists, philosophers, ethicists, sociologists and theologizes. The scientific data suggested that a single developmental moment marking the beginning of human life does not exist. Current biological perspectives on when human life begins range through fertilization, gastrulation, to birth and even after. The development of a newborn is a smoothly continuous process. PMID:18551364

  9. The beginning of human life : status of embryo. Perspectives in Halakha (Jewish Religious Law).

    PubMed

    Schenker, Joseph G

    2008-06-01

    The Jewish religion is characterized by a strict association between faith and practical precept. Jewish law has two sections, the written and the oral tradition. The foundation of the written law and the origin of authority is the Torah, the first five books of the Scripture. It is an expression of God's revelation, teaching and guiding humanity. The oral laws interpret, expand, and elucidate the written Torah and behavior patterns regulate new rules and customs. The main parts of the oral law are as follows: the Mishnah, the Talmud, Post-Talmudic Codes and. Responsa Literature. Life is a process that has a beginning and an end. The consensus about the time when human life really begins is still not reached among scientists, philosophers, ethicists, sociologists and theologizes. The scientific data suggested that a single developmental moment marking the beginning of human life does not exist. Current biological perspectives on when human life begins range through fertilization, gastrulation, to birth and even after. The development of a newborn is a smoothly continuous process. Procreation is acknowledged in the Bible to be the gift of God. The (Halachic) Jewish interpretation of when human life begins is extracted predominantly from procreation is acknowledged in the Bible to be the gift of God. The Jewish interpretation of when human life begins is extracted predominantly from The Halachic sources. The Bible does not make any other direct references regarding the beginning of human life. While the Talmud gives the full status of humanness to a child at birth, the rabbinical writings have partially extended the acquisition of humanness to the 13th postnatal day of life for full-term infants. The Babylonian Talmud Yevamot 69b states that: "the embryo is considered to be mere water until the fortieth day." Afterwards, it is considered subhuman until it is born. The issues of abortion, embryo research, multifetal reduction and cloning will be discussed according to Jewish Law perspectives. Life is a process that has a beginning and an end. The consensus about the time when human life really begins is still not reached among scientists, philosophers, ethicists, sociologists and theologizes. The scientific data suggested that a single developmental moment marking the beginning of human life does not exist. Current biological perspectives on when human life begins range through fertilization, gastrulation, to birth and even after. The development of a newborn is a smoothly continuous process.

  10. A half century of electronic fetal monitoring and bioethics: silence speaks louder than words.

    PubMed

    Sartwelle, Thomas P; Johnston, James C; Arda, Berna

    2017-01-01

    Bioethics abolished the prevailing Hippocratic tenet instructing physicians to make treatment decisions, replacing it with autonomy through informed consent. Informed consent allows the patient to choose treatment after options are explained by the physician. The appearance of bioethics in 1970 coincided with the introduction of electronic fetal monitoring (EFM), which evolved to become the fetal surveillance modality of choice for virtually all women in labor. Autonomy rapidly pervaded all medical procedures, but there was a clear exemption for EFM. Even today, EFM remains immune to the doctrine of informed consent despite continually mounting evidence which proves the procedure is nothing more than myth, illusion and junk science that subjects mothers and babies alike to increased risks of morbidity and mortality. And ethicists have remained utterly silent through a half century of EFM misuse. Our article explores this egregious ethical failure by reviewing EFM's lack of clinical efficacy, discussing the EFM related harm to mothers and babies, and focusing on the reasons that this obstetrical procedure eluded the revolutionary change from the Hippocratic tradition to autonomy through informed consent.

  11. [The Declaration of Istanbul on organ trafficking and transplant tourism].

    PubMed

    2009-01-01

    A Summit Meeting that convened over 150 representatives of scientific and medical bodies from around the world was held in Istanbul from April 30 to May 2, 2008 to address the urgent and growing problem of organ sales, transplant tourism and trafficking in organ donors in the context of the global shortage of organs. Preparatory work for the meeting was undertaken by a Steering Committee convened by The Transplantation Society and the International Society of Nephrology in Dubai in December 2007. Participants at the Istanbul Summit were selected by the Steering Committee according to the following criteria: The country liaisons with The Transplantation Society representing virtually all countries with transplantation programs; representatives from international societies and the Vatican; key stakeholders in nephrology and transplantation; public policy experts in organ transplantation; and ethicists, anthropologists, sociologists, and legal academic well-recognized for their work on transplantation policy and practice. This Declaration represents the consensus of the Summit participants and is an authorized Spanish translation that will help disseminate this information among Mexican health professionals and interested readers.

  12. The use of narrative in Jewish medical ethics.

    PubMed

    Jotkowitz, Alan

    2013-09-01

    Anne Jones has pointed out that over the last three decades, stories have been important to medical ethics in at least three ways: (1). Stories as cases for teaching principle-based medical ethics (2). Narratives for moral guides on what is considered living a good life (3). Stories as testimonials written by both patients and physicians. A pioneer in this effort, particularly in regard to using narratives as moral guides, has been the ethicist and philosopher Stanley Hauerwas. Heavily influenced by virtue ethics, Hauerwas believes that it is a person's particular narrative tradition that provides one with convictions that form the basis of one's morality. Befitting a Protestant theologian, he is particularly concerned with the Christian narrative. From a Jewish perspective, there has been much less written on the use of narrative in medical ethics. However, it is a mistake to think that narrative has little, if any, role in Rabbinic ethical decision making. The purpose of this article is to demonstrate the centrality of narrative in the thought of Orthodox Jewish decisors and the problems inherent in this methodology.

  13. Against anonymity.

    PubMed

    Baker, Robert

    2014-05-01

    In 'New Threats to Academic Freedom' Francesca Minerva argues that anonymity for the authors of controversial articles is a prerequisite for academic freedom in the Internet age. This argument draws its intellectual and emotional power from the author's account of the reaction to the on-line publication of ' After-birth abortion: why should the baby live?'--an article that provoked cascades of hostile postings and e-mails. Reflecting on these events, Minerva proposes that publishers should offer the authors of controversial articles the option of publishing their articles anonymously. This response reviews the history of anonymous publication and concludes that its reintroduction in the Internet era would recreate problems similar to those that led print journals to abandon the practice: corruption of scholarly discourse by invective and hate speech, masked conflicts of interest, and a diminution of editorial accountability. It also contends that Minerva misreads the intent of the hostile e-mails provoked by 'After-birth abortion,' and that ethicists who publish controversial articles should take responsibility by dialoguing with their critics--even those whose critiques are emotionally charged and hostile. © 2014 John Wiley & Sons Ltd.

  14. Goals of clinical ethics support: perceptions of Dutch healthcare institutions.

    PubMed

    Dauwerse, L; Abma, T A; Molewijk, B; Widdershoven, G

    2013-12-01

    In previous literature, ethicists mention several goals of Clinical Ethics Support (CES). It is unknown what key persons in healthcare institutions see as main--and sub-goals of CES. This article presents the goals of CES as perceived by board members and members of ethics support staff. This is part of a Dutch national research using a mixed methods design with questionnaires, focus groups and interviews. Quantitative and qualitative data were analyzed and combined in an iterative process. Four main clusters of goals were found: 1) encouraging an ethical climate, 2) fostering an accountable and transparent organization, 3) developing professionalism and a final goal, overarching the previous three, 4) good care. Most important sub-goals of CES were: attention for ethical issues, raising awareness of ethical issues, fostering ethical reflection and supporting employees. The article ends with a discussion on the desirability to further operationalize the general goal of good care, the context-boundedness of our findings and the need to relate goals of CES to the features of organizational cultures to further improve the integration of CES in healthcare institutions.

  15. The Struggle Between Liberties and Authorities in the Information Age.

    PubMed

    Taddeo, Mariarosaria

    2015-10-01

    The "struggle between liberties and authorities", as described by Mill, refers to the tension between individual rights and the rules restricting them that are imposed by public authorities exerting their power over civil society. In this paper I argue that contemporary information societies are experiencing a new form of such a struggle, which now involves liberties and authorities in the cyber-sphere and, more specifically, refers to the tension between cyber-security measures and individual liberties. Ethicists, political philosophers and political scientists have long debated how to strike an ethically sound balance between security measures and individual rights. I argue that such a balance can only be reached once individual rights are clearly defined, and that such a definition cannot prescind from an analysis of individual well-being in the information age. Hence, I propose an analysis of individual well-being which rests on the capability approach, and I then identify a set of rights that individuals should claim for themselves. Finally, I consider a criterion for balancing the proposed set of individual rights with cyber-security measures in the information age.

  16. The role of emotions in moral case deliberation: theory, practice, and methodology.

    PubMed

    Molewijk, Bert; Kleinlugtenbelt, Dick; Widdershoven, Guy

    2011-09-01

    In clinical moral decision making, emotions often play an important role. However, many clinical ethicists are ignorant, suspicious or even critical of the role of emotions in making moral decisions and in reflecting on them. This raises practical and theoretical questions about the understanding and use of emotions in clinical ethics support services. This paper presents an Aristotelian view on emotions and describes its application in the practice of moral case deliberation. According to Aristotle, emotions are an original and integral part of (virtue) ethics. Emotions are an inherent part of our moral reasoning and being, and therefore they should be an inherent part of any moral deliberation. Based on Aristotle's view, we examine five specific aspects of emotions: the description of emotions, the attitude towards emotions, the thoughts present in emotions, the reliability of emotions, and the reasonable principle that guides an emotion. We then discuss three ways of dealing with emotions in the process of moral case deliberation. Finally, we present an Aristotelian conversation method, and present practical experiences using this method. © 2011 Blackwell Publishing Ltd.

  17. A case for justified non-voluntary active euthanasia: exploring the ethics of the Groningen Protocol.

    PubMed

    Manninen, B A

    2006-11-01

    One of the most recent controversies to arise in the field of bioethics concerns the ethics for the Groningen Protocol: the guidelines proposed by the Groningen Academic Hospital in The Netherlands, which would permit doctors to actively euthanise terminally ill infants who are suffering. The Groningen Protocol has been met with an intense amount of criticism, some even calling it a relapse into a Hitleresque style of eugenics, where people with disabilities are killed solely because of their handicaps. The purpose of this paper is threefold. First, the paper will attempt to disabuse readers of this erroneous understanding of the Groningen Protocol by showing how such a policy does not aim at making quality-of-life judgements, given that it restricts euthanasia to suffering and terminally ill infants. Second, the paper illustrates that what the Groningen Protocol proposes to do is both ethical and also the most humane alternative for these suffering and dying infants. Lastly, responses are given to some of the worries expressed by ethicists on the practice of any type of non-voluntary active euthanasia.

  18. Ethical issues for otolaryngology and surgery in the elderly.

    PubMed

    Seidman, M D; Shapiro, D P; Shirwany, N A

    1999-06-01

    Clinical ethics is an intrinsic aspect of medical practice. Concerns for ethical conduct arise in the management of medical benefits, patient preferences, quality of life, and the relationship between patient care and its attendant familial, social, economic, and legal circumstances. Ethical concerns in surgical practice are central to the essence of the Hippocratic doctrine, "First do no harm." In caring for our patients, particularly in light of the modern practice of medicine, we often use the risk-benefit calculus. The range of ethical concerns for the otolaryngologist who deals with the elderly and infirm covers many diverse situations. Superimposed over this spectrum is the idea of patient autonomy, which is considered to be a cardinal issue in any ethical discussion. Furthermore, increasing medical care costs have created a debate regarding the rationing of healthcare. Ethicists continue the discussion as to whether age should be a decisive factor in the rationing of this care. Definitions of "heroic" and "extraordinary" assume greater significance, and controversies of language become pivotal when the comprehension and cognitive orientation of the patient are compromised by disease and senescence.

  19. Interpreting advance directives: ethical considerations of the interplay between personal and cultural identity.

    PubMed

    Schicktanz, Silke

    2009-06-01

    In many industrialized countries ethicists and lawyers favour advance directives as a tool to guarantee patient autonomy in end-of-life-decisions. However, most citizens seem reluctant to adopt the practice; the number of patients who have an advance directive is low across most countries. The article discusses the key argument for seeing such documents as an instrument of self-interpretation and life-planning, which ultimately have to be interpreted by third parties as well. Interpretation by third parties and the process of self-reflection are conceptually linked by a qualitative concept of identity. Identity is conceived here as constructed in a processual dialogue between a personal and a cultural perspective. How the cultural dimension comes into play in understanding the motivation, rejection or content of wished for end-of-life-decisions, is shown by a brief review of empirical and cultural studies. Understanding advance directives as a culturally embedded tool of self-interpretation should help to overcome urgent moral problems in clinical settings: how to interpret such documents, how to deliberate on the content and on the best form.

  20. Monological versus dialogical consciousness: two epistemological views on the use of theory in clinical ethical practice.

    PubMed

    Ohnsorge, Kathrin; Widdershoven, Guy

    2011-09-01

    In this article, we argue that a critical examination of epistemological and anthropological presuppositions might lead to a more fruitful use of theory in clinical-ethical practice. We differentiate between two views of conceptualizing ethics, referring to Charles Taylors' two epistemological models: 'monological' versus 'dialogical consciousness'. We show that the conception of ethics in the model of 'dialogical consciousness' is radically different from the classical understanding of ethics in the model of 'monological consciousness'. To reach accountable moral judgments, ethics cannot be conceptualized as an individual enterprise, but has to be seen as a practical endeavor embedded in social interactions within which moral understandings are being negotiated. This view has specific implications for the nature and the role of ethical theory. Theory is not created in the individual mind of the ethicist; the use of theory is part of a joint learning process and embedded in a cultural context and social history. Theory is based upon practice, and serves practical purposes. Thus, clinical ethics support is both practical and theoretical. © 2011 Blackwell Publishing Ltd.

  1. When a physician and a clinical ethicist collaborate for better patient care.

    PubMed

    Arawi, Thalia; Charafeddine, Lama

    2018-06-01

    Bioethics is a relatively new addition to bedside medical care in Arab world which is characterized by a special culture that often makes blind adaptation of western ethics codes and principles; a challenge that has to be faced. To date, the American University of Beirut Medical Center is the only hospital that offers bedside ethics consultations in the Arab Region aiming towards better patient-centered care. This article tackles the role of the bedside clinical ethics consultant as an active member of the medical team and the impact of such consultations on decision-making and patient-centered care. Using the case of a child with multiple medical problems and a futile medical condition, we describe how the collaboration of the medical team and the clinical ethics consultant took a comprehensive approach to accompany and lead the parents and the medical team in their decision-making process and how the consultations allowed several salient issues to be addressed. This approach proved to be effective in the Arab cultural setting and indeed did lead to better patientcentered care. © 2018 John Wiley & Sons Ltd.

  2. Ethics of placebo-controlled clinical trials in multiple sclerosis: a reassessment.

    PubMed

    Polman, C H; Reingold, S C; Barkhof, F; Calabresi, P A; Clanet, M; Cohen, J A; Cutter, G R; Freedman, M S; Kappos, L; Lublin, F D; McFarland, H F; Metz, L M; Miller, A E; Montalban, X; O'Connor, P W; Panitch, H; Richert, J R; Petkau, J; Schwid, S R; Sormani, M P; Thompson, A J; Weinshenker, B G; Wolinsky, J S

    2008-03-25

    The increasing number of established effective therapies for relapsing multiple sclerosis (MS) and emerging consensus for early treatment raise practical concerns and ethical dilemmas for placebo-controlled clinical trials in this disease. An international group of clinicians, ethicists, statisticians, regulators, and representatives from the pharmaceutical industry convened to reconsider prior recommendations regarding the ethics of placebo-controlled trials in MS. The group concluded that placebo-controlled trials can still be done ethically, with restrictions. For patients with relapsing MS for which established effective therapies exist, placebo-controlled trials should only be offered with rigorous informed consent if the subjects refuse to use these treatments, have not responded to them, or if these treatments are not available to them for other reasons (e.g., economics). Suggestions are provided to protect subject autonomy and improve informed consent procedures. Recommendations are tighter than previously suggested for placebo-controlled trials in "resource-restricted" environments where established therapies may not be available. Guidance is also provided on the ethics of alternative trial designs and the balance between study subject burden and risk, scientific rationale and interpretability of trial outcomes.

  3. Ethics and Medicine: Philosophical Guidelines for a Responsible Use of Nanotechnology

    NASA Astrophysics Data System (ADS)

    Pelluchon, Corine

    Ethics is not an isolated discipline, standing aloof from science, economics, and politics. And neither is it an authority devoted to censure, for it is not the philosopher's role to set up as an authority of any kind, nor to dictate to others what is good or bad in itself on the basis of some personal morality. Ethics is that part of philosophy that allows us to acquire the tools that serve to elucidate actions and assess them critically. The aim is to identify principles, that is, notions that are taken as fundamental and must guide our actions in medicine, in business, or in the application of biotechnology. However, these principles are not empty of content, and part of the philosopher's work in the field of applied ethics is to elucidate the values underlying the notion of autonomy and distributive justice, and to determine the relationship between the latter and the notion of equality. Likewise, the ethicist must consider the implicit and explicit norms belonging to some narrowly defined community (a group of professionals) or a broader community (a country), or even the international community.

  4. [The Declaration of Istanbul on organ trafficking and transplant tourism].

    PubMed

    2008-01-01

    To address the urgent and growing problems of organ sales, transplant tourism and trafficking in organ donors in context of global shortage of organs a Summit Meeting of more than 150 representatives of scientific and medical bodies from around the world was held in Istanbul from April 30 to May 2, 2008. Preparatory work for the meeting was undertaken by a Steering Committee convened by The Transplantation Society and the International Society of Nephrology in Dubai in 2007. Participants at the Istanbul Summit were selected by the Steering Committee according to the following considerations: The country liaisons with The Transplantation Society representing virtually all countries with transplantation programs; Representatives from international societies and the Vatican; Individuals holding leadership positions in nephrology and transplantation; Stakeholders in the public policy aspect of organ transplantation; and ethicists, anthropologists, sociologists, and legal academic well recognized for their writings regarding transplantation policy and practice. This Declaration represents the consensus of the Summit participants and it is an authorized Spanish translation version in order to divulging between Mexican healths professionals and to who concern this topic.

  5. Organ Donation After Euthanasia: A Dutch Practical Manual.

    PubMed

    Bollen, J; de Jongh, W; Hagenaars, J; van Dijk, G; Ten Hoopen, R; Ysebaert, D; Ijzermans, J; van Heurn, E; van Mook, W

    2016-07-01

    Many physicians and patients do not realize that it is legally and medically possible to donate organs after euthanasia. The combination of euthanasia and organ donation is not a common practice, often limited by the patient's underlying pathology, but nevertheless has been performed >40 times in Belgium and the Netherlands since 2005. In anticipation of patients' requests for organ donation after euthanasia and contributing to awareness of the possibility of this combination among general practitioners and medical specialists, the Maastricht University Medical Center and the Erasmus University Medical Center Rotterdam have developed a multidisciplinary practical manual in which the organizational steps regarding this combined procedure are described and explained. This practical manual lists the various criteria to fulfill and the rules and regulations the different stakeholders involved need to comply with to meet all due diligence requirements. Although an ethicist was involved in writing this paper, this report is not specifically meant to comprehensively address the ethical issues surrounding the topic. This paper is focused on the operational aspects of the protocol. © Copyright 2016 The American Society of Transplantation and the American Society of Transplant Surgeons.

  6. Innovation Through Tradition: Rediscovering the "Humanist" in the Medical Humanities.

    PubMed

    Kutac, Julie; Osipov, Rimma; Childress, Andrew

    2016-12-01

    Throughout its fifty-year history, the role of the medical humanist and even the name "medical humanities" has remained raw, dynamic and contested. What do we mean when we call ourselves "humanists" and our practice "medical humanities?" To address these questions, we turn to the concept of origin narratives. After explaining the value of these stories, we focus on one particularly rich origin narrative of the medical humanities by telling the story of how a group of educators, ethicists, and scholars struggling to define their relatively new field rediscovered the studia humanitatis, a Renaissance curriculum for learning and teaching. Our origin narrative is composed of two intertwined stories-the history of the studia humanitatis itself and the story of the scholars who rediscovered it. We argue that as an origin narrative the studia humanitatis grounds the medical humanities as both an engaged moral practice and pedagogical project. In the latter part of the paper, we use this origin narrative to show how medical humanists working in translational science can use their understanding of their historical roots to do meaningful work in the world.

  7. The Ethics Liaison Program: building a moral community.

    PubMed

    Bates, Sarah R; McHugh, Wendy J; Carbo, Alexander R; O'Neill, Stephen F; Forrow, Lachlan

    2017-09-01

    Ethicists often struggle to maintain institution-wide awareness of and commitment to medical ethics. At Beth Israel Deaconess Medical Center (BIDMC), we created the Ethics Liaison Program to address that challenge by making ethics part of the moral culture of the institution. Liaisons represent clinical and non-clinical areas throughout the medical centre. The liaison has a four-part role: to spread awareness and understanding of Ethics Programs among their coworkers; share information regarding ethical dilemmas in their work area with the members of the Ethics Support Service; review ethics activities and needs within their area; and undertake ethics-related projects. This paper lists the notable attributes of the Ethics Liaison Program, and describes the purpose and structure of the programme, its advantages and the challenges to implementing it. The Ethics Liaison Program has helped to make ethics part of the everyday culture at BIDMC, and other medical centres might benefit from the establishment of similar programmes. 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/.

  8. Some things ought never be done: moral absolutes in clinical ethics.

    PubMed

    Pellegrino, Edmund D

    2005-01-01

    Moral absolutes have little or no moral standing in our morally diverse modern society. Moral relativism is far more palatable for most ethicists and to the public at large. Yet, when pressed, every moral relativist will finally admit that there are some things which ought never be done. It is the rarest of moral relativists that will take rape, murder, theft, child sacrifice as morally neutral choices. In general ethics, the list of those things that must never be done will vary from person to person. In clinical ethics, however, the nature of the physician-patient relationship is such that certain moral absolutes are essential to the attainment of the good of the patient - the end of the relationship itself. These are all derivatives of the first moral absolute of all morality: Do good and avoid evil. In the clinical encounter, this absolute entails several subsidiary absolutes - act for the good of the patient, do not kill, keep promises, protect the dignity of the patient, do not lie, avoid complicity with evil. Each absolute is intrinsic to the healing and helping ends of the clinical encounter.

  9. Moral Expertise in the Clinic: Lessons Learned from Medicine and Science.

    PubMed

    McClimans, Leah; Slowther, Anne

    2016-08-01

    Philosophers and others have questioned whether or not expertise in morality is possible. This debate is not only theoretical, but also affects the perceived legitimacy of clinical ethicists. One argument against moral expertise is that in a pluralistic society with competing moral theories no one can claim expertise regarding what another ought morally to do. There are simply too many reasonable moral values and intuitions that affect theory choice and its application; expertise is epistemically uniform. In this article, we discuss how similar concerns have recently threatened to undermine expertise in medicine and science. In contrast, we argue that the application of values is needed to exercise medical, scientific, and moral expertise. As long as these values are made explicit, worries about a pretense to authority in the context of a liberal democracy are ill-conceived. In conclusion, we argue for an expertise that is epistemically diverse. © The Author 2016. 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.

  10. Development of ethical rules for boundaries of touch in complementary medicine--outcomes of a Delphi process.

    PubMed

    Schiff, Elad; Ben-Arye, Eran; Shilo, Margalit; Levy, Moti; Schachter, Leora; Weitchner, Na'ama; Golan, Ofra; Stone, Julie

    2010-11-01

    The practice of complementary medicine (CAM) often involves touch. The unique philosophy of many CAM therapies, and the setting in which treatments are provided create a therapeutic space which may be less clearly defined than in conventional settings - a space in which the boundaries between professional touch and personal/intimate touch may become easily obscured. Thus, complementary therapists need clear definitions and firm boundaries in order to maintain therapeutic efficacy and commitment. The aim of the process described in this article, was to develop ethical guidelines for boundaries of touch that will promote the safety and protection of the public which use CAM. Through a modified Delphi process, a diverse group of CAM practitioners, physicians, ethicists, legal consultants, health policy specialists, and representatives from the public, developed Ethical Rules for Boundaries of Touch in CAM. These guidelines may be implemented in ethical codes of professional CAM organizations, and also serve as a foundation for curriculums in ethics in CAM schools. Copyright © 2010 Elsevier Ltd. All rights reserved.

  11. Ethics committees in New Zealand.

    PubMed

    Gillett, Grant; Douglass, Alison

    2012-12-01

    The ethical review of research in New Zealand after the Cartwright Report of 1988 produced a major change in safeguards for and empowerment of participants in health care research. Several reforms since then have streamlined some processes but also seriously weakened some of the existing safeguards. The latest reforms, against the advice of various ethics bodies and the New Zealand Law Society, further reduced and attenuated the role of ethics committees so that New Zealand has moved from being a world leader in ethical review processes to there being serious doubt whether it is in conformity to international Conventions and codes. The latest round of reforms, seemingly driven by narrow economic aspirations, anecdote and innuendo, have occurred without any clear evidence of dysfunction in the system nor any plans for the resourcing required to improve quality of ethical review or to audit the process. It is of serious concern both to ethicists and medical lawyers in New Zealand that such hasty and poorly researched changes should have been made which threaten the hard-won gains of the Cartwright reforms.

  12. Neuroethics: A New Way of Doing Ethics

    PubMed Central

    Levy, Neil

    2011-01-01

    The aim of this article is to argue, by example, for neuroethics as a new way of doing ethics. Rather than simply giving us a new subject matter—the ethical issues arising from neuroscience—to attend to, neuroethics offers us the opportunity to refine the tools we use. Ethicists often need to appeal to the intuitions provoked by consideration of cases to evaluate the permissibility of types of actions; data from the sciences of the mind give us reason to believe that some of these intuitions are less reliable than others. I focus on the doctrine of double effect to illustrate my case, arguing that experimental results suggest that appeal to it might be question-begging. The doctrine of double effect is supposed to show that there is a moral difference between effects that are brought about intentionally and those that are merely foreseen; I argue that the data suggest that we regard some effects as merely foreseen only because we regard bringing them about as permissible. Appeal to the doctrine of double effect therefore cannot establish that there are such moral differences. PMID:22318976

  13. Big pharma and the problem of disease inflation.

    PubMed

    Gabriel, Joseph M; Goldberg, Daniel S

    2014-01-01

    Over the course of the past decade, critics have increasingly called attention to the corrosive influence of the pharmaceutical industry on both biomedical research and the practice of medicine. Critics describe the industry's use of ghostwriting and other unethical techniques to expand their markets as evidence that medical science is all-too-frequently subordinated to the goals of corporate profit. While we do not dispute this perspective, we argue that it is imperative to also recognize that the goals of medical science and industry profit are now tightly wed to one another. As a result, medical science now operates to expand disease definitions, lower diagnostic thresholds, and otherwise advance the goals of corporate profit through the redefinition and expansion of what it means to be ill. We suggest that this process has led to a variety of ethical problems that are not fully captured by current critiques of ghostwriting and other troubling practices by the pharmaceutical industry. In our conclusion, we call for physicians, ethicists, and other concerned observers to embrace a more fundamental critique of the relationship between biomedical science and corporate profit.

  14. Killing, letting die and euthanasia.

    PubMed Central

    Husak, D N

    1979-01-01

    Medical ethicists debate whether or not the moral assessment of cases of euthanasia should depend on whether the patient is 'killed' or 'allowed to die'. The usual presupposition is that a clear distinction between killing and letting die can be drawn so that this substantive question is not begged. I contend that the categorisation of cases of instances of killing rather than as instances of letting die depends in part on a prior moral assessment of the case. Hence is it trivially rather than substantively true that the distinction has moral significance. But even if a morally neutral (ie non-question begging) distinction could be drawn, its application to the euthanasia controversy is problematic. I illustrate the difficulties of employing this distinction to reach moral conclusions by critically discussing Philippa Foot's recent treatment of euthanasia. I conclude that even if an act of euthanasia is an instance of killing, and there exists a prima facie moral duty not to kill, and no more stringent duty overrides this duty, one still cannot determine such an act to be morally impermissible. PMID:541821

  15. Addiction, Autonomy, and Informed Consent: On and Off the Garden Path.

    PubMed

    Levy, Neil

    2016-02-01

    Several ethicists have argued that research trials and treatment programs that involve the provision of drugs to addicts are prima facie unethical, because addicts can't refuse the offer of drugs and therefore can't give informed consent to participation. In response, several people have pointed out that addiction does not cause a compulsion to use drugs. However, since we know that addiction impairs autonomy, this response is inadequate. In this paper, I advance a stronger defense of the capacity of addicts to participate in the programs envisaged. I argue that it is only in certain circumstances that addicts find themselves choosing in ways that conflict with their genuine preferences. Research and treatment programs have none of the features that characterize choices in these autonomy-undermining circumstances, and there is therefore no reason to think that addicts lack the capacity to give informed consent to these programs. © The Author 2015. 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.

  16. Judicial and legislative viewpoints on physician misestimation of patient dysutilities: a problem for decision analysts.

    PubMed

    Mazur, D J

    1990-01-01

    Appellate courts, state legislatures, and ethicists have recently (post-1972) been interested-through the evolving court doctrine of informed consent-in patient-physician joint decision making. Yet these professional groups' approaches differ markedly from that of decision analysis, failing to include an explicit role for patients' rational processing of information in informed consent. In addition, these groups charge that decision analysts are misestimating patient dysutilities. This paper examines three issues: 1) in what sense(s), if any, is decision-analytic work in individualized medical decision making misestimating patient dysutilities, 2) if this misestimation is real, whether it is an example of the normative-descriptive tensions that exist in medical decision making, and 3) in what ways do the relationships between decision-analytic and judicial decision making change when informed consent is viewed in terms of contract law as opposed to tort law. This paper argues that a key link dividing these professional groups is the differing weights given to the "value of information" by decision-analytic vs. non-decision-analytic frameworks.

  17. Devotion, Diversity, and Reasoning: Religion and Medical Ethics.

    PubMed

    Dahnke, Michael D

    2015-12-01

    Most modern ethicists and ethics textbooks assert that religion holds little or no place in ethics, including fields of professional ethics like medical ethics. This assertion, of course, implicitly refers to ethical reasoning, but there is much more to the ethical life and the practice of ethics-especially professional ethics-than reasoning. It is no surprise that teachers of practical ethics, myself included, often focus on reasoning to the exclusion of other aspects of the ethical life. Especially for those with a philosophical background, reasoning is the most patent and pedagogically controllable aspect of the ethical life-and the most easily testable. And whereas there may be powerful reasons for the limitation of religion in this aspect of ethics, there are other aspects of the ethical life in which recognition of religious belief may arguably be more relevant and possibly even necessary. I divide the ethical life into three areas-personal morality, interpersonal morality, and rational morality-each of which I explore in terms of its relationship to religion, normatively characterized by the qualities of devotion, diversity, and reasoning, respectively.

  18. Whitehead Policy Symposium. The Human Genome Project: Science, law, and social change in the 21st century

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

    Nichols, E.K.

    2000-02-17

    Advances in the biomedical sciences, especially in human genomics, will dramatically influence law, medicine, public health, and many other sectors of our society in the decades ahead. The public already senses the revolutionary nature of genomic knowledge. In the US and Europe, we have seen widespread discussions about genetic discrimination in health insurance; privacy issues raised by the proliferation of DNA data banks; the challenge of interpreting new DNA diagnostic tests; changing definitions of what it means to be healthy; and the science and ethics of cloning animals and human beings. The primary goal of the Whitehead/ASLME Policy Symposium wasmore » to provide a bridge between the research community and professionals, who were just beginning to grasp the potential impact of new genetic technologies on their fields. The ''Human Genome Project: Science, Law, and Social Change in the 21st Century'' initially was designed as a forum for 300-500 physicians, lawyers, consumers, ethicists, and scientists to explore the impact of new genetic technologies and prepare for the challenges ahead.« less

  19. Methods and Practices of Investigators for Determining Participants’ Decisional Capacity and Comprehension of Protocols

    PubMed Central

    Kon, Alexander A.; Klug, Michael

    2010-01-01

    Ethicists recommend that investigators assess subjects’ comprehension prior to accepting their consent as valid. Because children represent an at-risk population, ensuring adequate comprehension in pediatric research is vital. We surveyed all corresponding authors of research articles published over a six-month period in five leading adult and pediatric journals. Our goal was to assess how often subject’s comprehension or decisional capacity was assessed in the consent process, whether there was any difference between adult and pediatric research projects, and the rate at which investigators use formal or validated tools to assess capacity. Responses from 102 authors were analyzed (response rate 56%). Approximately two-thirds of respondents stated that they assessed comprehension or decisional capacity prior to accepting consent, and we found no difference between adult and pediatric researchers. Nine investigators used a formal questionnaire, and three used a validated tool. These findings suggest that fewer than expected investigators assess comprehension and decisional capacity, and that the use of standardized and validated tools is the exception rather than the rule. PMID:19385838

  20. Killing, letting die and euthanasia.

    PubMed

    Husak, D N

    1979-12-01

    Medical ethicists debate whether or not the moral assessment of cases of euthanasia should depend on whether the patient is 'killed' or 'allowed to die'. The usual presupposition is that a clear distinction between killing and letting die can be drawn so that this substantive question is not begged. I contend that the categorisation of cases of instances of killing rather than as instances of letting die depends in part on a prior moral assessment of the case. Hence is it trivially rather than substantively true that the distinction has moral significance. But even if a morally neutral (ie non-question begging) distinction could be drawn, its application to the euthanasia controversy is problematic. I illustrate the difficulties of employing this distinction to reach moral conclusions by critically discussing Philippa Foot's recent treatment of euthanasia. I conclude that even if an act of euthanasia is an instance of killing, and there exists a prima facie moral duty not to kill, and no more stringent duty overrides this duty, one still cannot determine such an act to be morally impermissible.

  1. Precision Nutrition 4.0: A Big Data and Ethics Foresight Analysis--Convergence of Agrigenomics, Nutrigenomics, Nutriproteomics, and Nutrimetabolomics.

    PubMed

    Özdemir, Vural; Kolker, Eugene

    2016-02-01

    Nutrition is central to sustenance of good health, not to mention its role as a cultural object that brings together or draws lines among societies. Undoubtedly, understanding the future paths of nutrition science in the current era of Big Data remains firmly on science, technology, and innovation strategy agendas around the world. Nutrigenomics, the confluence of nutrition science with genomics, brought about a new focus on and legitimacy for "variability science" (i.e., the study of mechanisms of person-to-person and population differences in response to food, and the ways in which food variably impacts the host, for example, nutrient-related disease outcomes). Societal expectations, both public and private, and claims over genomics-guided and individually-tailored precision diets continue to proliferate. While the prospects of nutrition science, and nutrigenomics in particular, are established, there is a need to integrate the efforts in four Big Data domains that are naturally allied--agrigenomics, nutrigenomics, nutriproteomics, and nutrimetabolomics--that address complementary variability questions pertaining to individual differences in response to food-related environmental exposures. The joint use of these four omics knowledge domains, coined as Precision Nutrition 4.0 here, has sadly not been realized to date, but the potentials for such integrated knowledge innovation are enormous. Future personalized nutrition practices would benefit from a seamless planning of life sciences funding, research, and practice agendas from "farm to clinic to supermarket to society," and from "genome to proteome to metabolome." Hence, this innovation foresight analysis explains the already existing potentials waiting to be realized, and suggests ways forward for innovation in both technology and ethics foresight frames on precision nutrition. We propose the creation of a new Precision Nutrition Evidence Barometer for periodic, independent, and ongoing retrieval, screening, and aggregation of the relevant life sciences data. For innovation in Big Data ethics oversight, we suggest "nested governance" wherein the processes of knowledge production are made transparent in the continuum from life sciences and social sciences to humanities, and where each innovation actor reports to another accountability and transparency layer: scientists to ethicists, and ethicists to scholars in the emerging field of ethics-of-ethics. Such nested innovation ecosystems offer safety against innovation blind spots, calibrate visible/invisible power differences in the cultures of science or ethics, and ultimately, reducing the risk of "paper values"--what people say--and "real values"--what innovation actors actually do. We are optimistic that the convergence of nutrigenomics with nutriproteomics, nutrimetabolomics, and agrigenomics can build a robust, sustainable, and trustworthy precision nutrition 4.0 agenda, as articulated in this Big Data and ethics foresight analysis.

  2. US Military Service Members' Reasons for Deciding to Participate in Health Research.

    PubMed

    Cook, Wendy A; Melvin, Kristal C; Doorenbos, Ardith Z

    2017-06-01

    Researchers have reported challenges in recruiting US military service members as research participants. We explored their reasons for participating. Eighteen US military service members who had participated in at least one health-related research study within the previous 3 years completed semi-structured individual interviews in person or by telephone, focused on the service members' past decisions regarding research participation. Service members described participation decisions for 34 individual research experiences in 27 separate studies. Service members' reasons for participation in research clustered in three themes: others-, self-, and fit-focused. Each decision included reasons characterized by at least two themes. Reasons from all three themes were apparent in two-thirds of individual participation decisions. Reasons described by at least half of the service members included a desire to make things better for others, to improve an organization, to help researchers, and to improve one's health; understanding how they fit in studies; and convenience of participation. Findings may help researchers, study sponsors, ethicists, military leaders, and military decision-makers better understand service members' reasons for participating in research and improve future recruitment of service members in health research. © 2017 Wiley Periodicals, Inc. © 2017 Wiley Periodicals, Inc.

  3. Funding considerations for the disclosure of genetic incidental findings in biobank research

    PubMed Central

    Black, L; Avard, D; Zawati, MH; Knoppers, BM; Hébert, J; Sauvageau, G

    2013-01-01

    The use of biobanks in biomedical research has grown considerably in recent years. As a result of the increasing analysis of tissue samples stored in biobanks, there has also been an increase in the probability of discovering—in addition to the research target—incidental findings (IF). We identified 23 laws, policies and guidelines from international, regional and national organizations that provide guidance or identify the need for the disclosure of IF to research participants. We analyzed these instruments to determine their contemplation of the funding considerations for the disclosure of IF, examining their guidance for who discloses and the extent of researcher responsibilities. We found that the available normative documents provide little guidance to researchers and biobanks for how they should address cost and funding concerns associated with IF disclosure. It is therefore essential that the research and policy communities think through the financial implications of imposing an ethical responsibility to disclose IF. Concerted efforts should be made by policymakers, ethicists, researchers, clinicians and research institutions to develop detailed funding recommendations, potentially universal in application, to aid in the disclosure of IF, and we provide recommendations on steps that can be taken to ensure full consideration of these issues. PMID:23662709

  4. Avoiding bias in medical ethical decision-making. Lessons to be learnt from psychology research.

    PubMed

    Albisser Schleger, Heidi; Oehninger, Nicole R; Reiter-Theil, Stella

    2011-05-01

    When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care or ethics consultation. In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making.

  5. What happens in the lab does not stay in the lab [corrected]: Applying midstream modulation to enhance critical reflection in the laboratory.

    PubMed

    Schuurbiers, Daan

    2011-12-01

    In response to widespread policy prescriptions for responsible innovation, social scientists and engineering ethicists, among others, have sought to engage natural scientists and engineers at the 'midstream': building interdisciplinary collaborations to integrate social and ethical considerations with research and development processes. Two 'laboratory engagement studies' have explored how applying the framework of midstream modulation could enhance the reflections of natural scientists on the socio-ethical context of their work. The results of these interdisciplinary collaborations confirm the utility of midstream modulation in encouraging both first- and second-order reflective learning. The potential for second-order reflective learning, in which underlying value systems become the object of reflection, is particularly significant with respect to addressing social responsibility in research practices. Midstream modulation served to render the socio-ethical context of research visible in the laboratory and helped enable research participants to more critically reflect on this broader context. While lab-based collaborations would benefit from being carried out in concert with activities at institutional and policy levels, midstream modulation could prove a valuable asset in the toolbox of interdisciplinary methods aimed at responsible innovation.

  6. Physician-Assisted Suicide and Euthanasia in the Intensive Care Unit: A Dialogue on Core Ethical Issues

    PubMed Central

    Goligher, Ewan C.; Ely, E. Wesley; Sulmasy, Daniel P.; Bakker, Jan; Raphael, John; Volandes, Angelo E.; Patel, Bhavesh M.; Payne, Kate; Hosie, Annmarie; Churchill, Larry; White, Douglas B.; Downar, James

    2016-01-01

    Objective Many patients are admitted to the intensive care unit at or near the end of their lives. Consequently, the increasingly common debate regarding physician-assisted suicide and euthanasia (PAS/E) holds implications for the practice of critical care medicine. The objective of this manuscript is to explore core ethical issues related to PAS/E from the perspective of healthcare professionals and ethicists on both sides of the debate. Synthesis We identified four issues highlighting the key areas of ethical tension central to evaluating PAS/E in medical practice: (1) the benefit or harm of death itself, (2) the relationship between PAS/E and withholding or withdrawing life support, (3) the morality of a physician deliberately causing death, and (4) the management of conscientious objection related to PAS/E in the critical care setting. We present areas of common ground as well as important unresolved differences. Conclusions We reached differing positions on the first three core ethical questions and achieved significant agreement on how critical care clinicians should manage conscientious objections related to PAS/E. The alternative positions presented in this paper may serve to promote open and informed dialogue within the critical care community. PMID:28098622

  7. The new military medical ethics: legacies of the Gulf Wars and the War on Terror.

    PubMed

    Miles, Steven H

    2013-03-01

    United States military medical ethics evolved during its involvement in two recent wars, Gulf War I (1990-1991) and the War on Terror (2001-). Norms of conduct for military clinicians with regard to the treatment of prisoners of war and the administration of non-therapeutic bioactive agents to soldiers were set aside because of the sense of being in a 'new kind of war'. Concurrently, the use of radioactive metal in weaponry and the ability to measure the health consequences of trade embargos on vulnerable civilians occasioned new concerns about the health effects of war on soldiers, their offspring, and civilians living on battlefields. Civilian medical societies and medical ethicists fitfully engaged the evolving nature of the medical ethics issues and policy changes during these wars. Medical codes of professionalism have not been substantively updated and procedures for accountability for new kinds of abuses of medical ethics are not established. Looking to the future, medicine and medical ethics have not articulated a vision for an ongoing military-civilian dialogue to ensure that standards of medical ethics do not evolve simply in accord with military exigency. © 2011 Blackwell Publishing Ltd.

  8. Specifying Specification.

    PubMed

    Paulo, Norbert

    2016-03-01

    This paper tackles the accusation that applied ethics is no serious academic enterprise because it lacks theoretical bracing. It does so in two steps. In the first step I introduce and discuss a highly acclaimed method to guarantee stability in ethical theories: Henry Richardson's specification. The discussion shows how seriously ethicists take the stability of the connection between the foundational parts of their theories and their further development as well as their "application" to particular problems or cases. A detailed scrutiny of specification leads to the second step, where I use insights from legal theory to inform the debate around stability from that point of view. This view reveals some of specification's limitations. I suggest that, once specification is sufficiently specified, it appears astonishingly similar to deduction as used in legal theory. Legal theory also provides valuable insight into the functional range of deduction and its relation to other forms of reasoning. This leads to a richer understanding of stability in normative theories and to a smart division of labor between deduction and other forms of reasoning. The comparison to legal theory thereby provides a framework for how different methods such as specification, deduction, balancing, and analogy relate to one another.

  9. Prevention and Screening in Hereditary Breast and Ovarian Cancer.

    PubMed

    Zeichner, Simon B; Stanislaw, Christine; Meisel, Jane L

    2016-10-15

    In recent years, we have learned a great deal about pathogenic mutations that increase the risk of breast and ovarian cancer, particularly mutations in the BRCA1 and BRCA2 genes. Here we review current guidelines on breast and ovarian cancer screening, prophylactic surgery, and other risk-reduction strategies in patients with these mutations, and we detail the data that drive these recommendations. We also discuss guidelines on screening and management for other cancers associated with BRCA1 and BRCA2, such as male breast cancer, pancreatic cancer, and prostate cancer. Discussions about genetic testing have become more complex with the advent of panel testing, which often allows for testing of a more comprehensive panel of genes than traditional BRCA1 and BRCA2 testing, but which is also associated with a higher likelihood of obtaining results with less clear data to inform management. It is difficult to come to a consensus on how best to address the varied and potentially challenging situations that may arise from genetic testing. The complexity inherent in managing these cases makes a multidisciplinary team-including medical oncologists, surgical oncologists, genetic counselors, reproductive endocrinologists, and medical ethicists-critical to optimization of care.

  10. Moral fiction or moral fact? The distinction between doing and allowing in medical ethics.

    PubMed

    Huddle, Thomas S

    2013-06-01

    Opponents of physician-assisted suicide (PAS) maintain that physician withdrawal-of-life-sustaining-treatment cannot be morally equated to voluntary active euthanasia. PAS opponents generally distinguish these two kinds of act by positing a possible moral distinction between killing and allowing-to-die, ceteris paribus. While that distinction continues to be widely accepted in the public discourse, it has been more controversial among philosophers. Some ethicist PAS advocates are so certain that the distinction is invalid that they describe PAS opponents who hold to the distinction as in the grip of 'moral fictions'. The author contends that such a diagnosis is too hasty. The possibility of a moral distinction between active euthanasia and allowing-to-die has not been closed off by the argumentative strategies employed by these PAS advocates, including the contrasting cases strategy and the assimilation of doing and allowing to a common sense notion of causation. The philosophical debate over the doing/allowing distinction remains inconclusive, but physicians and others who rely upon that distinction in thinking about the ethics of end-of-life care need not give up on it in response to these arguments. © 2012 John Wiley & Sons Ltd.

  11. 'God's ethicist': Albert Moll and his medical ethics in theory and practice.

    PubMed

    Maehle, Andreas-Holger

    2012-04-01

    In 1902, Albert Moll, who at that time ran a private practice for nervous diseases in Berlin, published his comprehensive book on medical ethics, Ärztliche Ethik. Based on the concept of a contractual relationship between doctor and client, it gave more room to the self-determination of patients than the contemporary, usually rather paternalistic, works of this genre. In the first part of the present paper this is illustrated by examining Moll's views and advice on matters such as truthfulness towards patients, euthanasia, and abortion. The second part of this article discusses how Moll engaged with the then publicly debated issues of experimentation on hospital patients and the 'trade' of foreign private patients between agents and medical consultants. In both matters Moll collected evidence of unethical practices and tried to use it to bring about change without damaging his or the profession's reputation. However, with his tactical manoeuvres, Moll made no friends for himself among his colleagues or the authorities; his book on ethics also met with a generally cool response from the medical profession and seems to have been more appreciated by lawyers than by other doctors.

  12. Déjà vu: a database of highly similar citations in the scientific literature

    PubMed Central

    Errami, Mounir; Sun, Zhaohui; Long, Tara C.; George, Angela C.; Garner, Harold R.

    2009-01-01

    In the scientific research community, plagiarism and covert multiple publications of the same data are considered unacceptable because they undermine the public confidence in the scientific integrity. Yet, little has been done to help authors and editors to identify highly similar citations, which sometimes may represent cases of unethical duplication. For this reason, we have made available Déjà vu, a publicly available database of highly similar Medline citations identified by the text similarity search engine eTBLAST. Following manual verification, highly similar citation pairs are classified into various categories ranging from duplicates with different authors to sanctioned duplicates. Déjà vu records also contain user-provided commentary and supporting information to substantiate each document's categorization. Déjà vu and eTBLAST are available to authors, editors, reviewers, ethicists and sociologists to study, intercept, annotate and deter questionable publication practices. These tools are part of a sustained effort to enhance the quality of Medline as ‘the’ biomedical corpus. The Déjà vu database is freely accessible at http://spore.swmed.edu/dejavu. The tool eTBLAST is also freely available at http://etblast.org. PMID:18757888

  13. Deja vu: a database of highly similar citations in the scientific literature.

    PubMed

    Errami, Mounir; Sun, Zhaohui; Long, Tara C; George, Angela C; Garner, Harold R

    2009-01-01

    In the scientific research community, plagiarism and covert multiple publications of the same data are considered unacceptable because they undermine the public confidence in the scientific integrity. Yet, little has been done to help authors and editors to identify highly similar citations, which sometimes may represent cases of unethical duplication. For this reason, we have made available Déjà vu, a publicly available database of highly similar Medline citations identified by the text similarity search engine eTBLAST. Following manual verification, highly similar citation pairs are classified into various categories ranging from duplicates with different authors to sanctioned duplicates. Déjà vu records also contain user-provided commentary and supporting information to substantiate each document's categorization. Déjà vu and eTBLAST are available to authors, editors, reviewers, ethicists and sociologists to study, intercept, annotate and deter questionable publication practices. These tools are part of a sustained effort to enhance the quality of Medline as 'the' biomedical corpus. The Déjà vu database is freely accessible at http://spore.swmed.edu/dejavu. The tool eTBLAST is also freely available at http://etblast.org.

  14. Physician-Assisted Suicide and Euthanasia in the ICU: A Dialogue on Core Ethical Issues.

    PubMed

    Goligher, Ewan C; Ely, E Wesley; Sulmasy, Daniel P; Bakker, Jan; Raphael, John; Volandes, Angelo E; Patel, Bhavesh M; Payne, Kate; Hosie, Annmarie; Churchill, Larry; White, Douglas B; Downar, James

    2017-02-01

    Many patients are admitted to the ICU at or near the end of their lives. Consequently, the increasingly common debate regarding physician-assisted suicide and euthanasia holds implications for the practice of critical care medicine. The objective of this article is to explore core ethical issues related to physician-assisted suicide and euthanasia from the perspective of healthcare professionals and ethicists on both sides of the debate. We identified four issues highlighting the key areas of ethical tension central to evaluating physician-assisted suicide and euthanasia in medical practice: 1) the benefit or harm of death itself, 2) the relationship between physician-assisted suicide and euthanasia and withholding or withdrawing life support, 3) the morality of a physician deliberately causing death, and 4) the management of conscientious objection related to physician-assisted suicide and euthanasia in the critical care setting. We present areas of common ground and important unresolved differences. We reached differing positions on the first three core ethical questions and achieved unanimity on how critical care clinicians should manage conscientious objections related to physician-assisted suicide and euthanasia. The alternative positions presented in this article may serve to promote open and informed dialogue within the critical care community.

  15. Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research

    PubMed Central

    Abdul-Karim, Ruqayyah; Berkman, Benjamin E.; Wendler, David; Rid, Annette; Khan, Javed; Badgett, Tom

    2013-01-01

    Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology. PMID:23400601

  16. A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines.

    PubMed

    Post, Stephen G; Pomeroy, John; Keirns, Carla; Cover, Virginia Isaacs; Dorn, Michael Leverett

    2017-06-01

    The increased recognition and reported prevalence of autism spectrum disorders (ASD) combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue (2010-2011) with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on "top-down" imposition of professional expertise, but rather on a "bottom-up" grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD.

  17. Euthanasia, virtue ethics and the law.

    PubMed

    van Zyl, Liezl

    2002-02-01

    Following the recent revival of virtue ethics, a number of ethicists have discussed the moral problems surrounding euthanasia by drawing on concepts such as compassion, benevolence, death with dignity, mercy, and by inquiring whether euthanasia is compatible with human flourishing. Most of these writers assert, or simply assume, that their arguments concerning the morality of euthanasia also support their views with regard to legislation. I argue, against these writers, that legislation cannot and should not be based on our moral and religious beliefs concerning whether euthanasia allows a person to die a good death. I then outline an Aristotelian approach to the role of law and government in a good society, according to which the task of the legislator is not to ensure that people actually act virtuously, but is instead to make it possible for them to choose to live (and die) well by ensuring that they have access to the goods that are necessary for flourishing. In the second half of the paper I apply this approach to the question of whether voluntary active euthanasia should be legalised by asking (1) whether euthanasia always deprives people of the necessary conditions for flourishing, and (2) whether the option to request euthanasia is ever necessary for flourishing.

  18. The nature of ethical conflicts and the meaning of moral community in oncology practice.

    PubMed

    Pavlish, Carol; Brown-Saltzman, Katherine; Jakel, Patricia; Fine, Alyssa

    2014-03-01

    To explore ethical conflicts in oncology practice and the nature of healthcare contexts in which ethical conflicts can be averted or mitigated. Ethnography. Medical centers and community hospitals with inpatient and outpatient oncology units in southern California and Minnesota. 30 oncology nurses, 6 ethicists, 4 nurse administrators, and 2 oncologists. 30 nurses participated in six focus groups that were conducted using a semistructured interview guide. Twelve key informants were individually interviewed. Coding, sorting, and constant comparison were used to reveal themes. Most ethical conflicts pertained to complex end-of-life situations. Three factors were associated with ethical conflicts: delaying or avoiding difficult conversations, feeling torn between competing obligations, and the silencing of different moral perspectives. Moral communities were characterized by respectful team relationships, timely communication, ethics-minded leadership, readily available ethics resources, and provider awareness and willingness to use ethics resources. Moral disagreements are expected to occur in complex clinical practice. However, when they progress to ethical conflicts, care becomes more complicated and often places seriously ill patients at the epicenter. Practice environments as moral communities could foster comfortable dialogue about moral differences and prevent or mitigate ethical conflicts and the moral distress that frequently follows.

  19. Nonaltruistic kidney donations in contemporary Jewish law and ethics.

    PubMed

    Grazi, Richard V; Wolowelsky, Joel B

    2003-01-27

    In 2000, the Consensus Statement on the Live Organ Donor reported that "direct financial compensation for an organ from a living donor remains controversial and illegal in the United States" and took note of the position of the Transplantation Society that "Organs and tissue should be given without commercial consideration or commercial profit." Christian authorities insist that organ donors must not accrue economic advantage, and "selling" organs deprives the donation of its ethical quality. The writings of major contemporary authorities of Jewish law and ethics whose halakhic positions on bioethical issues are regularly considered by Orthodox, Conservative, and Reform ethicists were reviewed. Their positions on this issue were contrasted with those of various contemporary secular and religious authorities. These Jewish authorities reject the notion that generosity and charity, rather than monetary gain and greed, must serve as the exclusive basis for donation of functioning organs. Although nonaltruistic sale of kidneys may be theoretically ethical, ultimately its ethical status in Jewish ethics and law is inextricably connected to solving a series of pragmatic programs, such as creating a system that ensures that potential vendors and donors are properly informed and not exploited. Lacking such arrangements, ethical nonaltruistic kidney donations remain but a theoretical possibility.

  20. Faith-to-faith at the bedside: theological and ethical issues in ecumenical clinical chaplaincy.

    PubMed

    Mellon, Brad F

    2003-04-01

    Chaplains who serve in a clinical context often minister to patients representing a wide variety of faiths. In order to offer the best pastoral care possible, the chaplain should first possess a set of personal theological convictions as a foundation for ministry. Second, he or she needs to be sensitive to the beliefs and practices of the patients. Third, it is vital to develop a relationship of acceptance and trust not only with patients under their care, but also with family members and caregivers as well. At times, situations will arise that are purely religious or theological. In a clinical setting, however, the questions and problems that arise more often are both theological and ethical. It is beneficial for the chaplain to be involved in an ethics committee, where the specifics of each case can be discussed, and staff can offer counsel to patients and their families. This study examines issues that chaplains face at the bedside, such as terminal care, life-prolonging treatments, dementia, persistent vegetative state, and euthanasia-assisted suicide. We will discover that those who are involved in clinical pastoral ministry will be called upon to be a comforter, mediator, educator, ethicist, and counselor.

  1. Enterprising or altruistic selves? Making up research subjects in genetics research.

    PubMed

    Tutton, Richard; Prainsack, Barbara

    2011-11-01

    The emergence of direct-to-consumer (DTC) personal genomics companies in 2007 was accompanied by considerable media attention and criticism from clinical geneticists and other health professionals, regulators, policy advisors, and ethicists. As well as offering genetic testing services, some firms are also engaged in building their own databases and conducting research with the data obtained from their customers. In this paper, we examine how one of these companies, 23andMe, is creating a certain kind of 'research subject' in opposition to that constituted in conventional forms of disease research. Drawing on debates about neoliberalism, contemporary health discourses and subjectivity, we consider two kinds of subjectivities produced through the discursive and material practices of 23andMe and UK Biobank, namely, 'enterprising' and 'altruistic' selves. We argue that the 23andMe model promotes the idea that curiosity about one's genome on the one hand, and participation in research on the other, are not only compatible but complementary aspects of being an entrepreneurial subject of contemporary health and medicine framed by the technologies of web 2.0. © 2011 The Authors. Sociology of Health & Illness © 2011 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

  2. Practitioner attitudes in the United States and United Kingdom toward decisions at the end of life

    PubMed Central

    Dickenson, Donna L

    2001-01-01

    Objective To assess whether UK and US health care professionals share the views of medical ethicists about medical futility, withdrawing or withholding treatment, ordinary or extraordinary interventions, and the doctrine of double effect. Design, subjects, and setting Answers to a 138-item attitudinal questionnaire completed by 469 UK nurses studying the Open University course on “Death and Dying” were compared with those of a similar questionnaire administered to 759 US nurses and 687 US physicians taking the Hastings Center course on “Decisions Near the End of Life.” Results Practitioners accept the relevance of concepts widely disparaged by bioethicists: double effect, medical futility, and the distinctions between heroic and ordinary interventions and withholding and withdrawing treatment. Within the UK nurses' group, the responses of a “rationalist” axis of respondents who describe themselves as having “no religion” are closer to the bioethics consensus on withholding and withdrawing treatment. Conclusions Professionals' beliefs differ substantially from the recommendations of their professional bodies and from majority opinion in bioethics. Bioethicists should be cautious about assuming that their opinions will be readily accepted by practitioners.

  3. Innovation Through Tradition: Rediscovering the “Humanist” in the Medical Humanities

    PubMed Central

    Osipov, Rimma; Childress, Andrew

    2018-01-01

    Throughout its fifty-year history, the role of the medical humanist and even the name “medical humanities” has remained raw, dynamic and contested. What do we mean when we call ourselves “humanists” and our practice “medical humanities?” To address these questions, we turn to the concept of origin narratives. After explaining the value of these stories, we focus on one particularly rich origin narrative of the medical humanities by telling the story of how a group of educators, ethicists, and scholars struggling to define their relatively new field rediscovered the studia humanitatis, a Renaissance curriculum for learning and teaching. Our origin narrative is composed of two intertwined stories—the history of the studia humanitatis itself and the story of the scholars who rediscovered it. We argue that as an origin narrative the studia humanitatis grounds the medical humanities as both an engaged moral practice and pedagogical project. In the latter part of the paper, we use this origin narrative to show how medical humanists working in translational science can use their understanding of their historical roots to do meaningful work in the world. PMID:26561349

  4. Teaching ethics in the clinic. The theory and practice of moral case deliberation.

    PubMed

    Molewijk, A C; Abma, T; Stolper, M; Widdershoven, G

    2008-02-01

    A traditional approach to teaching medical ethics aims to provide knowledge about ethics. This is in line with an epistemological view on ethics in which moral expertise is assumed to be located in theoretical knowledge and not in the moral experience of healthcare professionals. The aim of this paper is to present an alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics. This approach is called moral case deliberation. Within moral case deliberation, healthcare professionals bring in their actual moral questions during a structured dialogue. The ethicist facilitates the learning process by using various conversation methods in order to find answers to the case and to develop moral competencies. The case deliberations are not unique events, but are a structural part of the professional training on the work floor within healthcare institutions. This article presents the underlying theory on (teaching) ethics and illustrates this approach with an example of a moral case deliberation project in a Dutch psychiatric hospital. The project was evaluated using the method of responsive evaluation. This method provided us with rich information about the implementation process and effects the research process itself also lent support to the process of implementation.

  5. Minimal Risk in Pediatric Research: A Philosophical Review and Reconsideration

    PubMed Central

    Rossi, John; Nelson, Robert M.

    2017-01-01

    Despite more than thirty years of debate, disagreement persists among research ethicists about the most appropriate way to interpret the U.S. regulations on pediatric research, specifically the categories of “minimal risk” and a “minor increase over minimal risk.” Focusing primarily on the definition of “minimal risk,” we argue in this article that the continued debate about the pediatric risk categories is at least partly because their conceptual status is seldom considered directly. Once this is done, it becomes clear that the most popular strategy for interpreting “minimal risk”—defining it as a specific set of risks—is indefensible and, from a pragmatic perspective, unlikely to resolve disagreement. Primarily this is because judgments about minimal risk are both normative and heavily intuitive in nature and thus cannot easily be captured by reductions to a given set of risks. We suggest instead that a more defensible approach to evaluating risk should incorporate room for reflection and deliberation. This dispositional, deliberative framework can nonetheless accommodate a number of intellectual resources for reducing reliance on sheer intuition and improving the quality of risk evaluations. PMID:28777661

  6. Does medical education erode medical trainees' ethical attitude and behavior?

    PubMed Central

    Yavari, Neda

    2016-01-01

    In the last few years, medical education policy makers have expressed concern about changes in the ethical attitude and behavior of medical trainees during the course of their education. They claim that newly graduated physicians (MDs) are entering residency years with inappropriate habits and attitudes earned during their education. This allegation has been supported by numerous research on the changes in the attitude and morality of medical trainees. The aim of this paper was to investigate ethical erosion among medical trainees as a serious universal problem, and to urge the authorities to take urgent preventive and corrective action. A comparison with the course of moral development in ordinary people from Kohlberg’s and Gilligan's points of view reveals that the growth of ethical attitudes and behaviors in medical students is stunted or even degraded in many medical schools. In the end, the article examines the feasibility of teaching ethics in medical schools and the best approach for this purpose. It concludes that there is considerable controversy among ethicists on whether teaching ethical virtues is plausible at all. Virtue-based ethics, principle-based ethics and ethics of care are approaches that have been considered as most applicable in this regard. PMID:28050246

  7. US Military Service Members’ Reasons for Deciding to Participate in Health Research

    PubMed Central

    Cook, Wendy A.; Melvin, Kristal C.; Doorenbos, Ardith Z.

    2017-01-01

    Researchers have reported challenges in recruiting US military service members as research participants. We explored their reasons for participating. Eighteen US military service members who had participated in at least one health-related research study within the previous 3 years completed semi-structured individual interviews in person or by telephone, focused on the service members’ past decisions regarding research participation. Service members described participation decisions for 34 individual research experiences in 27 separate studies. Service members’ reasons for participation in research clustered in three themes: others-, self-, and fit-focused. Each decision included reasons characterized by at least two themes. Reasons from all three themes were apparent in two-thirds of individual participation decisions. Reasons described by at least half of the service members included a desire to make things better for others, to improve an organization, to help researchers, and to improve one’s health; understanding how they fit in studies; and convenience of participation. Findings may help researchers, study sponsors, ethicists, military leaders, and military decision-makers better understand service members’ reasons for participating in research and improve future recruitment of service members in health research. PMID:28185285

  8. Ethical issues in the use of genetic testing of patients with schizophrenia and their families.

    PubMed

    DeLisi, Lynn E

    2014-05-01

    This review outlines the positive and negative aspects of DNA testing and provides an account of the issues particularly relevant to schizophrenia. Modern technology has changed the field of medicine so rapidly that patients and their families have become much more independent in their healthcare decisions than in the previous decade. Simply by finding information on the Internet, they gain knowledge about disease diagnosis, treatment options and their side-effects. No medical field likely has been more affected and more controversial than that of genetics. It is now possible to sequence the individual human genome and detect single nucleotide variations, microdeletions and duplications within it. Commercial companies have sprung up in a similar manner to the software or electronic industries and have begun to market direct-to-consumer DNA testing. Much of this may be performed to satisfy curiosity about one's ancestry; but commercially available results that appear incidentally can also be distributed to the consumer. Ethicists, genetics researchers, clinicians and government agencies are currently in discussion about concerns raised about commercially available DNA testing, while at the same time recognizing its value in some instances to be able to predict very serious disabilities.

  9. Improving data availability for brain image biobanking in healthy subjects: Practice-based suggestions from an international multidisciplinary working group

    PubMed Central

    Shenkin, Susan D.; Pernet, Cyril; Nichols, Thomas E.; Poline, Jean-Baptiste; Matthews, Paul M.; van der Lugt, Aad; Mackay, Clare; Lanyon, Linda; Mazoyer, Bernard; Boardman, James P.; Thompson, Paul M.; Fox, Nick; Marcus, Daniel S.; Sheikh, Aziz; Cox, Simon R.; Anblagan, Devasuda; Job, Dominic E.; Dickie, David Alexander; Rodriguez, David; Wardlaw, Joanna M.

    2017-01-01

    Brain imaging is now ubiquitous in clinical practice and research. The case for bringing together large amounts of image data from well-characterised healthy subjects and those with a range of common brain diseases across the life course is now compelling. This report follows a meeting of international experts from multiple disciplines, all interested in brain image biobanking. The meeting included neuroimaging experts (clinical and non-clinical), computer scientists, epidemiologists, clinicians, ethicists, and lawyers involved in creating brain image banks. The meeting followed a structured format to discuss current and emerging brain image banks; applications such as atlases; conceptual and statistical problems (e.g. defining ‘normality’); legal, ethical and technological issues (e.g. consents, potential for data linkage, data security, harmonisation, data storage and enabling of research data sharing). We summarise the lessons learned from the experiences of a wide range of individual image banks, and provide practical recommendations to enhance creation, use and reuse of neuroimaging data. Our aim is to maximise the benefit of the image data, provided voluntarily by research participants and funded by many organisations, for human health. Our ultimate vision is of a federated network of brain image biobanks accessible for large studies of brain structure and function. PMID:28232121

  10. Patient, consumer, client, or customer: what do people want to be called?

    PubMed

    Deber, Raisa B; Kraetschmer, Nancy; Urowitz, Sara; Sharpe, Natasha

    2005-12-01

    To clarify preferred labels for people receiving health care. The proper label to describe people receiving care has evoked considerable debate among providers and bio-ethicists, but there is little evidence as to the preferences of the people involved. We analysed dictionary definitions as to the derivation and connotations of such potential labels as: patient, client, customer, consumer, partner and survivor. We then surveyed outpatients from four clinical populations in Ontario, Canada about their feelings about these labels. People from breast cancer (n = 202), prostate disease (n = 202) and fracture (n = 202) clinics in an urban Canadian teaching hospital (Sharpe study), and people with HIV/AIDS at 10 specialty care clinics and three primary care practices affiliated with the HIV Ontario Observational Database (n = 431). VARIABLES AND OUTCOME MEASURES: The survey instruments included questions about opinion of label, role in treatment decision-making (the Problem Solving Decision Making scale), trust, use of information and health status. Our respondents moderately liked the label 'patient'. The other alternatives evoked moderate to strong dislike. Many alternatives to 'patient' incorporate assumptions (e.g. a market relationship) which care recipients may also find objectionable. People who are receiving care find the label 'patient' much less objectionable than the alternatives that have been suggested.

  11. Medication monitoring and drug testing ethics project.

    PubMed

    Payne, Richard; Moe, Jeffrey L; Sevier, Catherine Harvey; Sevier, David; Waitzkin, Michael

    2015-01-01

    In 2012, Duke University initiated a research project, funded by an unrestricted research grant from Millennium Laboratories, a drug testing company. The project focused on assessing the frequency and nature of questionable, unethical, and illegal business practices in the clinical drug testing industry and assessing the potential for establishing a business code of ethics. Laboratory leaders, clinicians, industry attorneys, ethicists, and consultants participated in the survey, were interviewed, and attended two face-to-face meetings to discuss a way forward. The study demonstrated broad acknowledgment of variations in the legal and regulatory environment, resulting in inconsistent enforcement of industry practices. Study participants expressed agreement that overtly illegal practices sometimes exist, particularly when laboratory representatives and clinicians discuss reimbursement, extent of testing, and potential business incentives with medical practitioners. Most respondents reported directly observing probable violations involving marketing materials, contracts, or, in the case of some individuals, directly soliciting people with offers of clinical supplies and other "freebies." While many study respondents were skeptical that voluntary standards alone would eliminate questionable business practices, most viewed ethics codes and credentialing as an important first step that could potentially mitigate uneven enforcement, while improving quality of care and facilitating preferred payment options for credentialed parties. Many were willing to participate in future discussions and industry-wide initiatives to improve the environment.

  12. Means, ends and the ethics of fear-based public health campaigns.

    PubMed

    Bayer, Ronald; Fairchild, Amy L

    2016-06-01

    Controversy has swirled over the past three decades about the ethics of fear-based public health campaigns. The HIV/AIDS epidemic provided a context in which advocacy groups were almost uniformly hostile to any use of fear, arguing that it was inherently stigmatising and always backfired. Although this argument was often accepted within public health circles, surprisingly, the bioethicists who first grappled with this issue in terms of autonomy and coercion in the 1980s were not single-minded: fear could be autonomy-enhancing. But by the turn of the 21st century, as opponents of fear-based appeals linked them to stigmatisation, ethicists typically rejected fear as inherently unethical. The evidence has increasingly suggested that fear-based campaigns 'work.' Emotionally charged public health messages have, as a consequence, become more commonplace. We conclude that an ethics of public health, which prioritises population well-being, as contrasted with the contemporary focus of bioethics on autonomy, provides a moral warrant for ensuring that populations understand health risk 'in their guts.' This, we argue, does not relieve public health authorities from considering the burdens their efforts may impose on vulnerable populations. 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/

  13. Students' medical ethics rounds: a combinatorial program for medical ethics education.

    PubMed

    Beigy, Maani; Pishgahi, Ghasem; Moghaddas, Fateme; Maghbouli, Nastaran; Shirbache, Kamran; Asghari, Fariba; Abolfat-H Zadeh, Navid

    2016-01-01

    It has long been a common goal for both medical educators and ethicists to develop effective methods or programs for medical ethics education. The current lecture-based courses of medical ethics programs in medical schools are demonstrated as insufficient models for training "good doctors''. In this study, we introduce an innovative program for medical ethics education in an extra-curricular student-based design named Students' Medical Ethics Rounds (SMER). In SMER, a combination of educational methods, including theater-based case presentation, large group discussion, expert opinions, role playing and role modeling were employed. The pretest-posttest experimental design was used to assess the impact of interventions on the participants' knowledge and attitude regarding selected ethical topics. A total of 335 students participated in this study and 86.57% of them filled the pretest and posttest forms. We observed significant improvements in the knowledge (P < 0.0500) and attitude (P < 0.0001) of participants. Interestingly, 89.8% of participants declared that their confidence regarding how to deal with the ethical problems outlined in the sessions was increased. All of the applied educational methods were reported as helpful. We found that SMER might be an effective method of teaching medical ethics. We highly recommend the investigation of the advantages of SMER in larger studies and interdisciplinary settings.

  14. Students’ medical ethics rounds: a combinatorial program for medical ethics education

    PubMed Central

    Beigy, Maani; Pishgahi, Ghasem; Moghaddas, Fateme; Maghbouli, Nastaran; Shirbache, Kamran; Asghari, Fariba; Abolfat-h Zadeh, Navid

    2016-01-01

    It has long been a common goal for both medical educators and ethicists to develop effective methods or programs for medical ethics education. The current lecture-based courses of medical ethics programs in medical schools are demonstrated as insufficient models for training “good doctors’’. In this study, we introduce an innovative program for medical ethics education in an extra-curricular student-based design named Students’ Medical Ethics Rounds (SMER). In SMER, a combination of educational methods, including theater-based case presentation, large group discussion, expert opinions, role playing and role modeling were employed. The pretest-posttest experimental design was used to assess the impact of interventions on the participants’ knowledge and attitude regarding selected ethical topics. A total of 335 students participated in this study and 86.57% of them filled the pretest and posttest forms. We observed significant improvements in the knowledge (P < 0.0500) and attitude (P < 0.0001) of participants. Interestingly, 89.8% of participants declared that their confidence regarding how to deal with the ethical problems outlined in the sessions was increased. All of the applied educational methods were reported as helpful. We found that SMER might be an effective method of teaching medical ethics. We highly recommend the investigation of the advantages of SMER in larger studies and interdisciplinary settings. PMID:27471586

  15. Theory and practice of clinical ethics support services: narrative and hermeneutical perspectives.

    PubMed

    Porz, Rouven; Landeweer, Elleke; Widdershoven, Guy

    2011-09-01

    In this paper we introduce narrative and hermeneutical perspectives to clinical ethics support services (CESS). We propose a threefold consideration of 'theory' and show how it is interwoven with 'practice' as we go along. First, we look at theory in its foundational role: in our case 'narrative ethics' and 'philosophical hermeneutics' provide a theoretical base for clinical ethics by focusing on human identities entangled in stories and on moral understanding as a dialogical process. Second, we consider the role of theoretical notions in helping practitioners to understand their situation in clinical ethics practice, by using notions like 'story', 'responsibility', or 'vulnerability' to make explicit and explain their practical experience. Such theoretical notions help us to interpret clinical situations from an ethical perspective and to foster moral awareness of practitioners. And, thirdly, we examine how new theoretical concepts are developed by interpreting practice, using practice to form and improve our ethical theory. In this paper, we discuss this threefold use of theory in clinical ethics support services by reflecting on our own theoretical assumptions, methodological steps and practical experiences as ethicists, and by providing examples from our daily work. In doing so, we illustrate that theory and practice are interwoven, as theoretical understanding is dependent upon practical experience, and vice-versa. © 2011 Blackwell Publishing Ltd.

  16. 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.

  17. Interpretations, perspectives and intentions in surrogate motherhood

    PubMed Central

    van Zyl, L.; van Niekerk, A.

    2000-01-01

    In this paper we examine the questions "What does it mean to be a surrogate mother?" and "What would be an appropriate perspective for a surrogate mother to have on her pregnancy?" In response to the objection that such contracts are alienating or dehumanising since they require women to suppress their evolving perspective on their pregnancies, liberal supporters of surrogate motherhood argue that the freedom to contract includes the freedom to enter a contract to bear a child for an infertile couple. After entering the contract the surrogate may not be free to interpret her pregnancy as that of a non-surrogate mother, but there is more than one appropriate way of interpreting one's pregnancy. To restrict or ban surrogacy contracts would be to prohibit women from making other particular interpretations of their pregnancies they may wish to make, requiring them to live up to a culturally constituted image of ideal motherhood. We examine three interpretations of a "surrogate pregnancy" that are implicit in the views and arguments put forward by ethicists, surrogacy agencies, and surrogate mothers themselves. We hope to show that our concern in this regard goes beyond the view that surrogacy contracts deny or suppress the natural, instinctive or conventional interpretation of pregnancy. Key Words: Surrogate motherhood • parental rights and responsibilities PMID:11055048

  18. The Social Value of Knowledge and the Responsiveness Requirement for International Research.

    PubMed

    Wenner, Danielle M

    2017-02-01

    Ethicists have long recognized that two necessary features of ethical research are scientific validity and social value. Yet despite a significant literature surrounding the validity component of this dictate, until recently there has been little attention paid to unpacking what the social value component might require. This article introduces a framework for assessing the social value of research, and in particular, for determining whether a given research program is likely to have significant social value of the kind necessary to fulfill the social value requirement. The article goes on to illustrate how this framework can provide a clearer account of the responsiveness requirement, an ethical dictum that is oft-repeated but whose content and value as a guideline in international research remains contested. Although I introduce this conception of social value in the context of the responsiveness requirement, the account offered can, and is intended to, stand alone as a tool for the assessment of the social value of research. As such it can be usefully applied to discussions about the value of comparative effectiveness trials, the assessment of the continued proliferation of me-too drugs and the research done to develop them, the demand for public access to study-generated data, and persistent deficits in the publication of negative results. © 2017 John Wiley & Sons Ltd.

  19. Can informed consent to research be adapted to risk?

    PubMed

    Bromwich, Danielle; Rid, Annette

    2015-07-01

    The current ethical and regulatory framework for research is often charged with burdening investigators and impeding socially valuable research. To address these concerns, a growing number of research ethicists argue that informed consent should be adapted to the risks of research participation. This would require less rigorous consent standards in low-risk research than in high-risk research. However, the current discussion is restricted to cases of research in which the risks of research participation are outweighed by the potential clinical benefits for the individual research participant. Furthermore, current proposals do not address the concern that risk-adapted informed consent may result in enrolling participants into research without their autonomous authorisation. In this paper, we show how the standard view of informed consent--consent as autonomous authorisation--can be adapted to risk even when the research does not have a favourable risk-benefit profile for the participant. Our argument has two important implications: first, it implies that current and proposed consent standards are not adequately calibrated to risk and, second, that consent standards also need to be adapted to factors other than risk. 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.

  20. Improving data availability for brain image biobanking in healthy subjects: Practice-based suggestions from an international multidisciplinary working group.

    PubMed

    Shenkin, Susan D; Pernet, Cyril; Nichols, Thomas E; Poline, Jean-Baptiste; Matthews, Paul M; van der Lugt, Aad; Mackay, Clare; Lanyon, Linda; Mazoyer, Bernard; Boardman, James P; Thompson, Paul M; Fox, Nick; Marcus, Daniel S; Sheikh, Aziz; Cox, Simon R; Anblagan, Devasuda; Job, Dominic E; Dickie, David Alexander; Rodriguez, David; Wardlaw, Joanna M

    2017-06-01

    Brain imaging is now ubiquitous in clinical practice and research. The case for bringing together large amounts of image data from well-characterised healthy subjects and those with a range of common brain diseases across the life course is now compelling. This report follows a meeting of international experts from multiple disciplines, all interested in brain image biobanking. The meeting included neuroimaging experts (clinical and non-clinical), computer scientists, epidemiologists, clinicians, ethicists, and lawyers involved in creating brain image banks. The meeting followed a structured format to discuss current and emerging brain image banks; applications such as atlases; conceptual and statistical problems (e.g. defining 'normality'); legal, ethical and technological issues (e.g. consents, potential for data linkage, data security, harmonisation, data storage and enabling of research data sharing). We summarise the lessons learned from the experiences of a wide range of individual image banks, and provide practical recommendations to enhance creation, use and reuse of neuroimaging data. Our aim is to maximise the benefit of the image data, provided voluntarily by research participants and funded by many organisations, for human health. Our ultimate vision is of a federated network of brain image biobanks accessible for large studies of brain structure and function. Copyright © 2017 Elsevier Inc. All rights reserved.

  1. A CRISPR New World: Attitudes in the Public toward Innovations in Human Genetic Modification

    PubMed Central

    Weisberg, Steven M.; Badgio, Daniel; Chatterjee, Anjan

    2017-01-01

    The potential to genetically modify human germlines has reached a critical tipping point with recent applications of CRISPR-Cas9. Even as researchers, clinicians, and ethicists weigh the scientific and ethical repercussions of these advances, we know virtually nothing about public attitudes on the topic. Understanding such attitudes will be critical to determining the degree of broad support there might be for any public policy or regulation developed for genetic modification research. To fill this gap, we gave an online survey to a large (2,493 subjects) and diverse sample of Americans. Respondents supported genetic modification research, although demographic variables influenced these attitudes—conservatives, women, African-Americans, and older respondents, while supportive, were more cautious than liberals, men, other ethnicities, and younger respondents. Support was also was slightly muted when the risks (unanticipated mutations and possibility of eugenics) were made explicit. The information about genetic modification was also presented as contrasting vignettes, using one of five frames: genetic editing, engineering, hacking, modification, or surgery. Despite the fact that the media and academic use of frames describing the technology varies, these frames did not influence people’s attitudes. These data contribute a current snapshot of public attitudes to inform policy with regard to human genetic modification. PMID:28589120

  2. Adverse consequences of article 12 of the UN Convention on the Rights of Persons with Disabilities for persons with mental disabilities and an alternative way forward

    PubMed Central

    Gather, Jakov

    2018-01-01

    It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. PMID:29070707

  3. Anticipatory Governance: Bioethical Expertise for Human/Animal Chimeras

    PubMed Central

    Harvey, Alison; Salter, Brian

    2012-01-01

    The governance demands generated by the use of human/animal chimeras in scientific research offer both a challenge and an opportunity for the development of new forms of anticipatory governance through the novel application of bioethical expertise. Anticipatory governance can be seen to have three stages of development whereby bioethical experts move from a reactive to a proactive stance at the edge of what is scientifically possible. In the process, the ethicists move upstream in their engagement with the science of human-to-animal chimeras. To what extent is the anticipatory coestablishment of the principles and operational rules of governance at this early stage in the development of the human-to-animal research field likely to result in a framework for bioethical decision making that is in support of science? The process of anticipatory governance is characterised by the entwining of the scientific and the philosophical so that judgements against science are also found to be philosophically unfounded, and conversely, those activities that are permissible are deemed so on both scientific and ethical grounds. Through what is presented as an organic process, the emerging bioethical framework for human-to-animal chimera research becomes a legitimating framework within which ‘good’ science can safely progress. Science gives bioethical expertise access to new governance territory; bioethical expertise gives science access to political acceptability. PMID:23576848

  4. Nutrigenomics 2.0: The Need for Ongoing and Independent Evaluation and Synthesis of Commercial Nutrigenomics Tests' Scientific Knowledge Base for Responsible Innovation.

    PubMed

    Pavlidis, Cristiana; Nebel, Jean-Christophe; Katsila, Theodora; Patrinos, George P

    2016-02-01

    Nutrigenomics is an important strand of precision medicine that examines the bidirectional interactions of the genome and nutritional exposures, and attendant health and disease outcomes. This perspectives article presents the new concept of "Nutrigenomics 2.0," so as to cultivate and catalyze the next generation research and funding priorities for responsible and sustainable knowledge-based innovations. We further contextualize our recent study of the 38 genes included in commercially available nutrigenomics tests, and offer additional context in relation to the 2014 American Academy of Nutrition and Dietetics position. Finally, we make a call in the best interest of the nutrigenomics science community, governments, global society, and commercial nutrigenomics test providers that new evidence evaluation and synthesis platforms are created concerning nutrigenomics tests before they become commercially available. The proposed assessment and synthesis of nutrigenomics data should be carried out on an ongoing dynamic basis with periodic intervals and/or when there is a specific demand for evidence synthesis, and importantly, in ways that are transparent where conflict of interests are disclosed fully by the involved parties, be they scientists, industry, governments, citizens, social scientists, or ethicists. We submit that this will cultivate responsible innovation, and business models that are sustainable, robust, and stand the test of time and context.

  5. Improving interactions between animal rights groups and conservation biologists.

    PubMed

    Perry, Dan; Perry, Gad

    2008-02-01

    Invasive species are often considered to be a major threat to biodiversity, leading conservation biologists to often recommend their complete eradication. Animal rights groups typically categorically oppose killing animals, and their opposition has brought eradication attempts of gray squirrels in northern Italy (Europe) and mute swans in Vermont to a halt. As a result native red squirrels may disappear from Europe and ecosystem-wide impacts are expected to be caused by the swan. In contrast, cooperation between managers and animal rights groups has resulted in a successful control program for feral pigs in Fort Worth, Texas (U.S.A.). The philosophical differences between animal rights and conservation biologists' views make cooperation seem unlikely, yet documented cases of cooperation have been beneficial for both groups. We recommend that managers dealing with invasive species should consult with social scientists and ethicists to gain a better understanding of the implications of some of their policy decisions. In addition, we recommend that animal rights groups do more to support alternatives to lethal control, which are often excluded by economic limitations. Prevention of arrival of invasive species via application of the precautionary principle may be an especially productive avenue for such collaboration because it fits the goals and values of both groups.

  6. The SickKids Genome Clinic: developing and evaluating a pediatric model for individualized genomic medicine.

    PubMed

    Bowdin, S C; Hayeems, R Z; Monfared, N; Cohn, R D; Meyn, M S

    2016-01-01

    Our increasing knowledge of how genomic variants affect human health and the falling costs of whole-genome sequencing are driving the development of individualized genomic medicine. This new clinical paradigm uses knowledge of an individual's genomic variants to anticipate, diagnose and manage disease. While individualized genetic medicine offers the promise of transformative change in health care, it forces us to reconsider existing ethical, scientific and clinical paradigms. The potential benefits of pre-symptomatic identification of at-risk individuals, improved diagnostics, individualized therapy, accurate prognosis and avoidance of adverse drug reactions coexist with the potential risks of uninterpretable results, psychological harm, outmoded counseling models and increased health care costs. Here we review the challenges, opportunities and limits of integrating genomic analysis into pediatric clinical practice and describe a model for implementing individualized genomic medicine. Our multidisciplinary team of bioinformaticians, health economists, health services and policy researchers, ethicists, geneticists, genetic counselors and clinicians has designed a 'Genome Clinic' research project that addresses multiple challenges in pediatric genomic medicine--ranging from development of bioinformatics tools for the clinical assessment of genomic variants and the discovery of disease genes to health policy inquiries, assessment of clinical care models, patient preference and the ethics of consent. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  7. Euthanasia and related practices worldwide.

    PubMed

    Kelleher, M J; Chambers, D; Corcoran, P; Keeley, H S; Williamson, E

    1998-01-01

    The present paper examines the occurrence of matters relating to the ending of life, including active euthanasia, which is, technically speaking, illegal worldwide. Interest in this most controversial area is drawn from many varied sources, from legal and medical practitioners to religious and moral ethicists. In some countries, public interest has been mobilized into organizations that attempt to influence legislation relating to euthanasia. Despite the obvious international importance of euthanasia, very little is known about the extent of its practice, whether passive or active, voluntary or involuntary. This examination is based on questionnaires completed by 49 national representatives of the International Association for Suicide Prevention (IASP), dealing with legal and religious aspects of euthanasia and physician-assisted suicide, as well as suicide. A dichotomy between the law and medical practices relating to the end of life was uncovered by the results of the survey. In 12 of the 49 countries active euthanasia is said to occur while a general acceptance of passive euthanasia was reported to be widespread. Clearly, definition is crucial in making the distinction between active and passive euthanasia; otherwise, the entire concept may become distorted, and legal acceptance may become more widespread with the effect of broadening the category of individuals to whom euthanasia becomes an available option. The "slippery slope" argument is briefly considered.

  8. A CRISPR New World: Attitudes in the Public toward Innovations in Human Genetic Modification.

    PubMed

    Weisberg, Steven M; Badgio, Daniel; Chatterjee, Anjan

    2017-01-01

    The potential to genetically modify human germlines has reached a critical tipping point with recent applications of CRISPR-Cas9. Even as researchers, clinicians, and ethicists weigh the scientific and ethical repercussions of these advances, we know virtually nothing about public attitudes on the topic. Understanding such attitudes will be critical to determining the degree of broad support there might be for any public policy or regulation developed for genetic modification research. To fill this gap, we gave an online survey to a large (2,493 subjects) and diverse sample of Americans. Respondents supported genetic modification research, although demographic variables influenced these attitudes-conservatives, women, African-Americans, and older respondents, while supportive, were more cautious than liberals, men, other ethnicities, and younger respondents. Support was also was slightly muted when the risks (unanticipated mutations and possibility of eugenics) were made explicit. The information about genetic modification was also presented as contrasting vignettes, using one of five frames: genetic editing, engineering, hacking, modification, or surgery. Despite the fact that the media and academic use of frames describing the technology varies, these frames did not influence people's attitudes. These data contribute a current snapshot of public attitudes to inform policy with regard to human genetic modification.

  9. Body integrity identity disorder (BIID)--is the amputation of healthy limbs ethically justified?

    PubMed

    Müller, Sabine

    2009-01-01

    The term body integrity identity disorder (BIID) describes the extremely rare phenomenon of persons who desire the amputation of one or more healthy limbs or who desire a paralysis. Some of these persons mutilate themselves; others ask surgeons for an amputation or for the transection of their spinal cord. Psychologists and physicians explain this phenomenon in quite different ways; but a successful psychotherapeutic or pharmaceutical therapy is not known. Lobbies of persons suffering from BIID explain the desire for amputation in analogy to the desire of transsexuals for surgical sex reassignment. Medical ethicists discuss the controversy about elective amputations of healthy limbs: on the one hand the principle of autonomy is used to deduce the right for body modifications; on the other hand the autonomy of BIID patients is doubted. Neurological results suggest that BIID is a brain disorder producing a disruption of the body image, for which parallels for stroke patients are known. If BIID were a neuropsychological disturbance, which includes missing insight into the illness and a specific lack of autonomy, then amputations would be contraindicated and must be evaluated as bodily injuries of mentally disordered patients. Instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image.

  10. On the lingua franca of clinical ethics.

    PubMed

    Fins, Joseph J

    2013-01-01

    In this 25-year retrospective on the state of clinical ethics, and the anniversary of the founding of The Journal of Clinical Ethics, the author comments on the state of the field. He argues that the language of bioethics, as used in practice, seems dated and out of touch with a clinical reality marked by emerging technologies and the advent of new fields like palliative medicine. Reflecting on his experiences as a clinician and clinical ethicist, the author worries about the emergence of a shallow bioethics, which is the product of a lingua franca. This linguistic amalgam is a weak composite in which concepts are simplified and nuance is overlooked, leading to interpretative errors. The best of ethical reasoning or clinical decision making can be lost in translation. Instead of the well-worn arguments over the relative worth of modes of ethical analysis, like principlism or pragmatism, the author argues that the emphasis should be on the cultivation of the "linguistic" skills necessary for translating any critical method in order to replace the lingua franca of clinical ethics with a more substantial discourse worthy of the complexity of the clinic.Through the emergence of such a shared language, at the interface of the sciences and the humanities, this multidisciplinary field can evolve towards more authentic interdisciplinarity.

  11. A Multistep, Consensus-Based Approach to Organ Allocation in Liver Transplantation: Toward a "Blended Principle Model".

    PubMed

    Cillo, U; Burra, P; Mazzaferro, V; Belli, L; Pinna, A D; Spada, M; Nanni Costa, A; Toniutto, P

    2015-10-01

    Since Italian liver allocation policy was last revised (in 2012), relevant critical issues and conceptual advances have emerged, calling for significant improvements. We report the results of a national consensus conference process, promoted by the Italian College of Liver Transplant Surgeons (for the Italian Society for Organ Transplantation) and the Italian Association for the Study of the Liver, to review the best indicators for orienting organ allocation policies based on principles of urgency, utility, and transplant benefit in the light of current scientific evidence. MELD exceptions and hepatocellular carcinoma were analyzed to construct a transplantation priority algorithm, given the inequity of a purely MELD-based system for governing organ allocation. Working groups of transplant surgeons and hepatologists prepared a list of statements for each topic, scoring their quality of evidence and strength of recommendation using the Centers for Disease Control grading system. A jury of Italian transplant surgeons, hepatologists, intensivists, infectious disease specialists, epidemiologists, representatives of patients' associations and organ-sharing organizations, transplant coordinators, and ethicists voted on and validated the proposed statements. After carefully reviewing the statements, a critical proposal for revising Italy's current liver allocation policy was prepared jointly by transplant surgeons and hepatologists. © Copyright 2015 The American Society of Transplantation and the American Society of Transplant Surgeons.

  12. Revealing and acknowledging value judgments in health technology assessment.

    PubMed

    Hofmann, Bjørn; Cleemput, Irina; Bond, Kenneth; Krones, Tanja; Droste, Sigrid; Sacchini, Dario; Oortwijn, Wija

    2014-12-01

    Although value issues are increasingly addressed in health technology assessment (HTA) reports, HTA is still seen as a scientific endeavor and sometimes contrasted with value judgments, which are considered arbitrary and unscientific. This article aims at illustrating how numerous value judgments are at play in the HTA process, and why it is important to acknowledge and address value judgments. A panel of experts involved in HTA, including ethicists, scrutinized the HTA process with regard to implicit value judgments. It was analyzed whether these value judgments undermine the accountability of HTA results. The final results were obtained after several rounds of deliberation. Value judgments are identified before the assessment when identifying and selecting health technologies to assess, and as part of assessment. They are at play in the processes of deciding on how to select, frame, present, summarize or synthesize information in systematic reviews. Also, in economic analysis, value judgments are ubiquitous. Addressing the ethical, legal, and social issues of a given health technology involves moral, legal, and social value judgments by definition. So do the appraisal and the decision-making process. HTA by and large is a process of value judgments. However, the preponderance of value judgments does not render HTA biased or flawed. On the contrary they are basic elements of the HTA process. Acknowledging and explicitly addressing value judgments may improve the accountability of HTA.

  13. Honeymoon, medical treatment or big business? An analysis of the meanings of the term "reproductive tourism" in German and Israeli public media discourses.

    PubMed

    Bassan, Sharon; Michaelsen, Merle A

    2013-08-20

    Infertile couples that travel to another country for reproductive treatment do not refer to themselves as "reproductive tourists". They might even be offended by this term. "Tourism" is a metaphor with hidden connotations. We will analyze these connotations in public media discourses on "reproductive tourism" in Israel and Germany. We chose to focus on these two countries since legal, ethical and religious restrictions give couples a similar motivation to travel for reproductive care, while the cultural backgrounds and conceptions of reproduction are different. Our research shows that the use of the metaphor "reproductive treatment" and its hidden messages depends on the writers' intention and the target population. Although the phenomenon of patients travelling for reproductive treatment can fit into the definitions of tourism, the term emphasizes aspects that do not reflect patients' reality. In both the German and the Israeli public media debate the term "reproductive tourism" is either used to criticize the economic aspects of the phenomenon or to attract patients as potential clients. Ethicists should be cautious when borrowing metaphors like "reproductive tourism" from the public debate. Our findings support Penning's suggestion to use instead an unloaded term like cross-border reproductive care to describe the phenomenon in a more neutral way and to make it explicit whenever criticism is necessary.

  14. The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe.

    PubMed

    Hastings, Ros; de Wert, Guido; Fowler, Brian; Krawczak, Michael; Vermeulen, Eric; Bakker, Egbert; Borry, Pascal; Dondorp, Wybo; Nijsingh, Niels; Barton, David; Schmidtke, Jörg; van El, Carla G; Vermeesch, Joris; Stol, Yrrah; Carmen Howard, Heidi; Cornel, Martina C

    2012-09-01

    The arrival of new genetic technologies that allow efficient examination of the whole human genome (microarray, next-generation sequencing) will impact upon both laboratories (cytogenetic and molecular genetics in the first instance) and clinical/medical genetic services. The interpretation of analytical results in terms of their clinical relevance and the predicted health status poses a challenge to both laboratory and clinical geneticists, due to the wealth and complexity of the information obtained. There is a need to discuss how to best restructure the genetic services logistically and to determine the clinical utility of genetic testing so that patients can receive appropriate advice and genetic testing. To weigh up the questions and challenges of the new genetic technologies, the European Society of Human Genetics (ESHG) held a series of workshops on 10 June 2010 in Gothenburg. This was part of an ESHG satellite symposium on the 'Changing landscape of genetic testing', co-organized by the ESHG Genetic Services Quality and Public and Professional Policy Committees. The audience consisted of a mix of geneticists, ethicists, social scientists and lawyers. In this paper, we summarize the discussions during the workshops and present some of the identified ways forward to improve and adapt the genetic services so that patients receive accurate and relevant information. This paper covers ethics, clinical utility, primary care, genetic services and the blurring boundaries between healthcare and research.

  15. Reporting results from whole-genome and whole-exome sequencing in clinical practice: a proposal for Canada?

    PubMed

    Zawati, Ma'n H; Parry, David; Thorogood, Adrian; Nguyen, Minh Thu; Boycott, Kym M; Rosenblatt, David; Knoppers, Bartha Maria

    2014-01-01

    This article proposes recommendations for the use of whole-genome and whole-exome (WGS/WES) sequencing in clinical practice, endorsed by the board of directors of the Canadian College of Medical Geneticists. The publication of statements and recommendations by several international and national organisations on clinical WGS/WES has prompted a need for Canadian-specific guidance. A multi-disciplinary group consisting of lawyers, ethicists, genetic researchers, and clinical geneticists was assembled to review existing guidelines on WGS/WES and identify provisions relevant to the Canadian context. Definitions were provided to orient the recommendations and to minimize confusion with other recommendations. Recommendations include the following: WGS/WES should be used in a judicious and cost-efficient manner; WGS/WES should be used to answer a clinical question; and physicians need to explain to adult patients the nature of the results that could arise, so as to allow them to make informed choices over whether to take the test and which results they wish to receive. Recommendations are also provided for WGS/WES in the pediatric context, and for when results implicate patients' family members. These recommendations are only a proposal to be developed into comprehensive Canadian-based guidelines. They aim to promote discussion about the reporting of WGS/WES results, and to encourage the ethical implementation of these new technologies in the clinical setting.

  16. Patient, consumer, client, or customer: what do people want to be called?

    PubMed Central

    Deber, Raisa B.; Kraetschmer, Nancy; Urowitz, Sara; Sharpe, Natasha

    2005-01-01

    Abstract Objective  To clarify preferred labels for people receiving health care. Background  The proper label to describe people receiving care has evoked considerable debate among providers and bio‐ethicists, but there is little evidence as to the preferences of the people involved. Design  We analysed dictionary definitions as to the derivation and connotations of such potential labels as: patient, client, customer, consumer, partner and survivor. We then surveyed outpatients from four clinical populations in Ontario, Canada about their feelings about these labels. Setting and participants  People from breast cancer (n = 202), prostate disease (n = 202) and fracture (n = 202) clinics in an urban Canadian teaching hospital (Sharpe study), and people with HIV/AIDS at 10 specialty care clinics and three primary care practices affiliated with the HIV Ontario Observational Database (n = 431). Variables and outcome measures  The survey instruments included questions about opinion of label, role in treatment decision‐making (the Problem Solving Decision Making scale), trust, use of information and health status. Results  Our respondents moderately liked the label ‘patient’. The other alternatives evoked moderate to strong dislike. Conclusions  Many alternatives to ‘patient’ incorporate assumptions (e.g. a market relationship) which care recipients may also find objectionable. People who are receiving care find the label ‘patient’ much less objectionable than the alternatives that have been suggested. PMID:16266422

  17. Resolving disagreements in the patient-physician relationship: tools for improving communication in managed care.

    PubMed

    Levinson, W; Gorawara-Bhat, R; Dueck, R; Egener, B; Kao, A; Kerr, C; Lo, B; Perry, D; Pollitz, K; Reifsteck, S; Stein, T; Santa, J; Kemp-White, M

    1999-10-20

    Managed care uses financial incentives and restrictions on tests and procedures to attempt to influence physician decision making and limit costs. Increasingly, the public is questioning whether physicians are truly making decisions based on the patient's best interest or are unduly influenced by economic incentives. These circumstances lead to the potential for disagreements and conflict in the patient-physician relationship. We convened a group of individuals in October 1998, including patient representatives, leaders from health care organizations, practicing physicians, communication experts, and medical ethicists, to articulate the types of disagreements emerging in the patient-physician relationship as a result of managed care. We addressed 3 specific scenarios physicians may encounter, including allocation, illustrated by a patient who is referred to a different ophthalmologist based on a new arrangement in the physician's group; access, illustrated by a patient who wishes to see his own physician for a same-day visit rather than a nurse specialist; and financial incentives, illustrated by a patient who expects to have a test performed and a physician who does not believe the test is necessary but is afraid the patient will think the physician is not ordering the test because of financial incentives. Using these scenarios, we suggest communication strategies that physicians can use to decrease the potential for disagreements. In addition, we propose strategies that health plans or physician groups can use to alleviate or resolve these disagreements.

  18. Dynamic axes of informed consent in Japan.

    PubMed

    Specker Sullivan, Laura

    2017-02-01

    Scholarship in cross-cultural bioethics routinely frames Japanese informed consent in contrast to informed consent in North America. This contrastive analysis foregrounds cancer diagnosis disclosure and physician paternalism as unique aspects of Japanese informed consent that deviate from American practices. Drawing on in-depth interviews with 15 Japanese medical professionals obtained during fieldwork in Japan from 2013 to 15, this article complicates the informed consent discourse beyond East-West comparisons premised on Anglo-American ethical frameworks. It expands professional perspectives to include nurses, medical social workers, clinical psychologists, and ethicists and it addresses informed consent for a broad range of conditions in addition to cancer. The results suggest that division of affective labor is an under-theorized dimension of informed consent that is perceived as at odds with principled demands for universal informed consent. These practical tensions are conceptualized as cultural differences, with Japan identified in terms of omakase as practical and supportive and the United States identified in terms of jiko kettei as principled and self-determining. These results have implications for the methodology of cross-cultural bioethics as well as for theories and practices of informed consent in both Japan and the United States. I conclude that responsible cross-cultural work in bioethics must begin from the ground up, incorporating all relevant stakeholder perspectives, attitudes, and experiences. Copyright © 2016 Elsevier Ltd. All rights reserved.

  19. Altered standards of care during an influenza pandemic: identifying ethical, legal, and practical principles to guide decision making.

    PubMed

    Levin, Donna; Cadigan, Rebecca Orfaly; Biddinger, Paul D; Condon, Suzanne; Koh, Howard K

    2009-12-01

    Although widespread support favors prospective planning for altered standards of care during mass casualty events, the literature includes few, if any, accounts of groups that have formally addressed the overarching policy considerations at the state level. We describe the planning process undertaken by public health officials in the Commonwealth of Massachusetts, along with community and academic partners, to explore the issues surrounding altered standards of care in the event of pandemic influenza. Throughout 2006, the Massachusetts Department of Public Health and the Harvard School of Public Health Center for Public Health Preparedness jointly convened a working group comprising ethicists, lawyers, clinicians, and local and state public health officials to consider issues such as allocation of antiviral medications, prioritization of critical care, and state seizure of private assets. Community stakeholders were also engaged in the process through facilitated discussion of case scenarios focused on these and other issues. The objective of this initiative was to establish a framework and some fundamental principles that would subsequently guide the process of establishing specific altered standards of care protocols. The group collectively identified 4 goals and 7 principles to guide the equitable allocation of limited resources and establishment of altered standards of care protocols. Reviewing and analyzing this process to date may serve as a resource for other states.

  20. The new genetics

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

    Jaroff, L.

    1991-01-01

    Knowing the location and make-up of each of the 50,000 to 100,000 human genes will revolutionize the practice of medicine. This knowledge will lead to tailor-made therapies not only for treating disease but also for preventing it - in short, to a new concept of patient care. The Human Genome Project, a 15-year, $3 billion quest to determine the nucleotide sequence of the entire human genome, will make this possible. In The New Genetics, Leon Jaroff recounts the long path of discovery thatt has led to this huge new scientific venture - from the theory of heredity put forth bymore » Aristotle more than 2,000 years ago to the current attempts to treat adenosine deaminase (ADA) deficiency and malignant melanoma via gene therapy. Against this background, the geneticists, molecular biologists, clinicians, and ethicists involved in the Human Genome Project describe their work and how it will provide physicians with ever more precise and effective tools to treat human disease. Jaroff also reveals the other, more problematic side of the story. Patients with an undesirable genetic profile may be subject to discrimination by private insurers. Physicians who fail to recommend genetic screening may find themselves victims of malpractice or wrongful-life suits. Indeed, these issues and others have already begun to affect physicians. The New Genetics makes it abundantly clear tha a revolution has arrived, and that physicians must be prepared to cope with the new order.« less

  1. Of wholes and parts: A Thomistic refutation of "Brain Death".

    PubMed

    Accad, Michel

    2015-08-01

    I propose a refutation of the two major arguments that support the concept of "brain death" as an ontological equivalent to death of the human organism. I begin with a critique of the notion that a body part, such as the brain, could act as "integrator" of a whole body. I then proceed with a rebuttal of the argument that destruction of a body part essential for rational operations-such as the brain-necessarily entails that the remaining whole is indisposed to accrue a rational soul. Next, I point to the equivocal use of the terms "alive" or "living" as being at the root of conceptual errors about brain death. I appeal to the Thomistic definition of life and to the hylomorphic concept of "virtual presence" to clarify this confusion. Finally, I show how the Thomistic definition of life supports the traditional criterion for the determination of death. Lay summary: By the mid-1960s, medical technology became available that could keep "alive" the bodies of patients who had sustained complete and irreversible brain injury. The concept of "brain death" emerged to describe such states. Physicians, philosophers, and ethicists then proposed that the state of brain death is equivalent to the state of death traditionally identified by the absence of spontaneous pulse and respiration. This article challenges the major philosophical arguments that have been advanced to draw this equivalence.

  2. The four-principle formulation of common morality is at the core of bioethics mediation method.

    PubMed

    Ahmadi Nasab Emran, Shahram

    2015-08-01

    Bioethics mediation is increasingly used as a method in clinical ethics cases. My goal in this paper is to examine the implicit theoretical assumptions of the bioethics mediation method developed by Dubler and Liebman. According to them, the distinguishing feature of bioethics mediation is that the method is useful in most cases of clinical ethics in which conflict is the main issue, which implies that there is either no real ethical issue or if there were, they are not the key to finding a resolution. I question the tacit assumption of non-normativity of the mediation method in bioethics by examining the various senses in which bioethics mediation might be non-normative or neutral. The major normative assumption of the mediation method is the existence of common morality. In addition, the four-principle formulation of the theory articulated by Beauchamp and Childress implicitly provides the normative content for the method. Full acknowledgement of the theoretical and normative assumptions of bioethics mediation helps clinical ethicists better understand the nature of their job. In addition, the need for a robust philosophical background even in what appears to be a purely practical method of mediation cannot be overemphasized. Acknowledgement of the normative nature of bioethics mediation method necessitates a more critical attitude of the bioethics mediators towards the norms they usually take for granted uncritically as valid.

  3. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.

    PubMed

    Budin-Ljøsne, Isabelle; Teare, Harriet J A; Kaye, Jane; Beck, Stephan; Bentzen, Heidi Beate; Caenazzo, Luciana; Collett, Clive; D'Abramo, Flavio; Felzmann, Heike; Finlay, Teresa; Javaid, Muhammad Kassim; Jones, Erica; Katić, Višnja; Simpson, Amy; Mascalzoni, Deborah

    2017-01-25

    Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

  4. Clinical Ethics Consultation: Examining how American and Japanese experts analyze an Alzheimer's case

    PubMed Central

    Nagao, Noriko; Aulisio, Mark P; Nukaga, Yoshio; Fujita, Misao; Kosugi, Shinji; Youngner, Stuart; Akabayashi, Akira

    2008-01-01

    Background Few comparative studies of clinical ethics consultation practices have been reported. The objective of this study was to explore how American and Japanese experts analyze an Alzheimer's case regarding ethics consultation. Methods We presented the case to physicians and ethicists from the US and Japan (one expert from each field from both countries; total = 4) and obtained their responses through a questionnaire and in-depth interviews. Results Establishing a consensus was a common goal among American and Japanese participants. In attempting to achieve consensus, the most significant similarity between Japanese and American ethics consultants was that they both appeared to adopt an "ethics facilitation" approach. Differences were found in recommendation and assessment between the American and Japanese participants. In selecting a surrogate, the American participants chose to contact the grandson before designating the daughter-in-law as the surrogate decision-maker. Conversely the Japanese experts assumed that the daughter-in-law was the surrogate. Conclusion Our findings suggest that consensus building through an "ethics facilitation" approach may be a commonality to the practice of ethics consultation in the US and Japan, while differences emerged in terms of recommendations, surrogate assessment, and assessing treatments. Further research is needed to appreciate differences not only among different nations including, but not limited to, countries in Europe, Asia and the Americas, but also within each country. PMID:18226273

  5. Ethical bodies: are they possible under democratic systems? The Turkish example.

    PubMed

    Arda, Berna

    2009-09-01

    In this article, the relationship between ethics bodies and democratic concepts will be introduced. One should bear in mind that the relationship between the flourishing of ethics committees (EC) and democracy is by no means undirectional. The line of causation can easily be reversed as a higher level of democracy is likely to lead to a spurt in such committees at different levels of society. It is not a coincidence that they appear in larger numbers in relatively more open and democratic societies. In this sense, their sheer existence might be taken as a sign of a higher level of awareness for openness and democracy. EC seems to have some functions theoretically: To contribute to the eradication of corruption in society; To increase the accountability of different sections of the population; To play an important part in increasing the awareness about the rights and duties; To contribute to the spread of self-disciplining behavior in society; One final point to be emphasized is that for ethical committees to fulfill the above functions they should have a clear set of guidelines, powers to enforce them and effective deterrents to prevent wayward behavior. The principal question of how it does works in Turkey--a country located at the junction of Europe and Asia--ought to be perceived from the point of view of a medical ethicist from a developing country.

  6. Nutrigenomics 2.0: The Need for Ongoing and Independent Evaluation and Synthesis of Commercial Nutrigenomics Tests' Scientific Knowledge Base for Responsible Innovation

    PubMed Central

    Pavlidis, Cristiana; Nebel, Jean-Christophe; Katsila, Theodora

    2016-01-01

    Abstract Nutrigenomics is an important strand of precision medicine that examines the bidirectional interactions of the genome and nutritional exposures, and attendant health and disease outcomes. This perspectives article presents the new concept of “Nutrigenomics 2.0,” so as to cultivate and catalyze the next generation research and funding priorities for responsible and sustainable knowledge-based innovations. We further contextualize our recent study of the 38 genes included in commercially available nutrigenomics tests, and offer additional context in relation to the 2014 American Academy of Nutrition and Dietetics position. Finally, we make a call in the best interest of the nutrigenomics science community, governments, global society, and commercial nutrigenomics test providers that new evidence evaluation and synthesis platforms are created concerning nutrigenomics tests before they become commercially available. The proposed assessment and synthesis of nutrigenomics data should be carried out on an ongoing dynamic basis with periodic intervals and/or when there is a specific demand for evidence synthesis, and importantly, in ways that are transparent where conflict of interests are disclosed fully by the involved parties, be they scientists, industry, governments, citizens, social scientists, or ethicists. We submit that this will cultivate responsible innovation, and business models that are sustainable, robust, and stand the test of time and context. PMID:26689492

  7. Direct-to-consumer advertising in oncology.

    PubMed

    Abel, Gregory A; Penson, Richard T; Joffe, Steven; Schapira, Lidia; Chabner, Bruce A; Lynch, Thomas J

    2006-02-01

    Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded The Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to patients and support to caregivers while encouraging the healing process. The center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum in which caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. Increasingly, cancer patients are subjected to advertisements related to oncologic therapies and other cancer-related products in the popular media. Such direct-to-consumer advertising is controversial: while it may inform, educate, and perhaps even empower patients, it also has the ability to misinform patients, and strain their relationships with oncology providers. The U.S. Food and Drug Administration requires that direct-to-consumer advertising provide a balanced presentation of a product's benefits, risks, and side effects, but this can be difficult to achieve. Through a discussion of this topic by an oncology fellow, ethicist, cancer survivor, and senior oncologist, the role of direct-to-consumer advertising and its often subtle effects on clinical practice in oncology are explored. Although sparse, the medical literature on this increasingly prevalent type of medical communication is also reviewed.

  8. Ethics support for GPs: what should it look like?

    PubMed

    Clark-Grill, Monika

    2016-03-01

    INTRODUCTION Ethics support services for hospital clinicians have become increasingly common globally but not as yet in New Zealand. However, an initiative to change this is gathering momentum. Its slogan 'Clinical ethics is everyone's business' indicates that the aim is to encompass all of health care, not just the hospital sector. General Practitioners (GPs) deal with ethical issues on a daily basis. These issues are often quite different from ethical issues in hospitals. To make future ethics support relevant for primary care, local GPs were interviewed to find out how they might envisage ethics support services that could be useful to them. METHODS A focus group interview with six GPs and semi-structured individual interviews with three GPs were conducted. Questions included how they made decisions on ethical issues at present, what they perceived as obstacles to ethical reflection and decision-making, and what support might be helpful. FINDINGS Three areas of ethics support were considered potentially useful: Formal ethics education during GP training, access to an ethicist for assistance with analysing an ethical issue, and professional guidance with structured ethics conversations in peer groups. CONCLUSION The complex nature of general practice requires GPs to be well educated and supported for handling ethical issues. The findings from this study could serve as input to the development of ethics support services. KEYWORDS General practice; primary care; ethics; support; education.

  9. Addressing the shortage of kidneys for transplantation: purchase and allocation through chain auctions.

    PubMed

    Rosen, Lara; Vining, Aidan R; Weimer, David L

    2011-08-01

    Transplantation is generally the treatment of choice for those suffering from kidney failure. Not only does transplantation offer improved quality of life and increased longevity relative to dialysis, it also reduces end-stage renal disease program expenditures, providing savings to Medicare. Unfortunately, the waiting list for kidney transplants is long, growing, and unlikely to be substantially reduced by increases in the recovery of cadaveric kidneys. Another approach is to obtain more kidneys through payment to living "donors," or vendors. Such direct commodification, in which a price is placed on kidneys, has generally been opposed by medical ethicists. Much of the ethical debate, however, has been in terms of commodification through market exchange. Recognizing that there are different ethical concerns associated with the purchase of kidneys and their allocation, it is possible to design a variety of institutional arrangements for the commodification of kidneys that pose different sets of ethical concerns. We specify three such alternatives in detail sufficient to allow an assessment of their likely consequences and we compare these alternatives to current policy in terms of the desirable goals of promoting human dignity, equity, efficiency, and fiscal advantage. This policy analysis leads us to recommend that kidneys be purchased at administered prices by a nonprofit organization and allocated to the transplant centers that can organize the longest chains of transplants involving willing-but-incompatible donor-patient dyads.

  10. Strikes and the National Health Service: Some legal and ethical issues

    PubMed Central

    Dworkin, Gerald

    1977-01-01

    This paper is sadly opportune. The general public is angry and bewildered if not hurt by the variety of strikes which are brought more or less forcibly to their attention. People used to understand what lay behind a strike - a demand for more pay, better conditions - but today a political element often intrudes, and it is this that worries those who ask themselves whether this or that dispute is either lawful or morally acceptable. Professor Dworkin, a lawyer, first sets out the legal issues surrounding strikes and then advances the ethical arguments, closely relating them to the legal framework. The most interesting part of the paper, however, may well be that devoted to the moral obligation of example, in particular the example to be set by members of the medical profession and by all those caring for the sick. As public attitudes to industrial disputes `become dulled and quiescent' it is absolutely necessary that there should be a reappraisal of the moral standards of the past which coincide with a respect for the law. In the last century the term `anomie' was used to describe a `society which has shaken off its former restraints such as religion, respect for law and order and a definite moral code as to what is right and wrong'. We are living in that sort of society today, and one need not be a professional `ethicist' to recognize the signs, and hopefully, to work for the return of `ethical' values. PMID:874982

  11. Normative ethics does not need a foundation: it needs more science.

    PubMed

    Quintelier, Katinka; Van Speybroeck, Linda; Braeckman, Johan

    2011-03-01

    The impact of science on ethics forms since long the subject of intense debate. Although there is a growing consensus that science can describe morality and explain its evolutionary origins, there is less consensus about the ability of science to provide input to the normative domain of ethics. Whereas defenders of a scientific normative ethics appeal to naturalism, its critics either see the naturalistic fallacy committed or argue that the relevance of science to normative ethics remains undemonstrated. In this paper, we argue that current scientific normative ethicists commit no fallacy, that criticisms of scientific ethics contradict each other, and that scientific insights are relevant to normative inquiries by informing ethics about the options open to the ethical debate. Moreover, when conceiving normative ethics as being a nonfoundational ethics, science can be used to evaluate every possible norm. This stands in contrast to foundational ethics in which some norms remain beyond scientific inquiry. Finally, we state that a difference in conception of normative ethics underlies the disagreement between proponents and opponents of a scientific ethics. Our argument is based on and preceded by a reconsideration of the notions naturalistic fallacy and foundational ethics. This argument differs from previous work in scientific ethics: whereas before the philosophical project of naturalizing the normative has been stressed, here we focus on concrete consequences of biological findings for normative decisions or on the day-to-day normative relevance of these scientific insights.

  12. Content validation of the 'Mosaic of Opinions About Abortion' (Mosai).

    PubMed

    Cacique, Denis Barbosa; Passini Junior, Renato; Osis, Maria José Martins Duarte

    2013-01-01

    This study aimed to develop and validate the contents of the Mosaico de Opiniões Sobre o Aborto Induzido (Mosai), a structured questionnaire intended to be used as a tool to collect information about the views of health professionals about the morality of abortion. The contents of the first version of the questionnaire was developed based on the technique of thematic content analysis of books, articles, films, websites and newspapers reporting cases of abortion and arguing about their practice. The Mosai was composed of 6 moral dilemmas (vignettes) related to induced abortion, whose outcomes should be chosen by the respondents and could be justified by the classification of 15 patterns of arguments about the morality of abortion. In order to validate its contents, the questionnaire was submitted to the scrutiny of a panel of 12 experts, an intentional sample consisted of doctors, lawyers, ethicists, sociologists, nurses and statisticians, who evaluated the criteria of clarity of writing, relevance, appropriateness to sample and suitability to the fields. These scores were analyzed by the method of concordance rate, while the free comments were analyzed using the analysis technique content. All the moral dilemmas and arguments were considered valid according to the rate of agreement, however, some comments led to the exclusion of a dilemma about emergency contraception, among other changes. The content of Mosai was considered valid to serve as a tool to collect the opinions of healthcare professionals regarding the morality of abortion. Copyright © 2013 Elsevier Editora Ltda. All rights reserved.

  13. Reflective equilibrium and empirical data: third person moral experiences in empirical medical ethics.

    PubMed

    De Vries, Martine; Van Leeuwen, Evert

    2010-11-01

    In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This 'empirical turn' is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached. © 2009 Blackwell Publishing Ltd.

  14. The portrayal of J. Marion Sims' controversial surgical legacy.

    PubMed

    Spettel, Sara; White, Mark Donald

    2011-06-01

    In the mid 1800s Dr. J. Marion Sims reported the successful repair of vesicovaginal fistulas with a technique he developed by performing multiple operations on female slaves. A venerated physician in his time, the legacy of Dr. Sims is controversial and represents a significant chapter in the mistreatment of African-Americans by the medical establishment. This review compares the modern debate surrounding his legacy with the presentation of his operation in widely consulted urological texts and journals. A literature review was performed of medical, sociological and periodical sources (1851 to the present) regarding J. Marion Sims and vesicovaginal fistula repair. During the last several decades, while the controversy around Dr. Sims' surgical development has produced a steady stream of articles in the historical and popular literature, relatively little mention is found in standard urology textbooks or journals. With increased public attention, some have debated the removal or modification of public tributes to Dr. Sims. This move has been countered by arguments against the validity of judging a 19th century physician by modern standards. While historians, ethicists and the popular press have debated Dr. Sims' legacy, medical sources have continued to portray him unquestionably as a great figure in medical history. This division keeps the medical profession uninformed and detached from the public debate on his legacy and, thus, the larger issues of ethical treatment of surgical patients. Copyright © 2011 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

  15. The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe

    PubMed Central

    Hastings, Ros; de Wert, Guido; Fowler, Brian; Krawczak, Michael; Vermeulen, Eric; Bakker, Egbert; Borry, Pascal; Dondorp, Wybo; Nijsingh, Niels; Barton, David; Schmidtke, Jörg; van El, Carla G; Vermeesch, Joris; Stol, Yrrah; Carmen Howard, Heidi; Cornel, Martina C

    2012-01-01

    The arrival of new genetic technologies that allow efficient examination of the whole human genome (microarray, next-generation sequencing) will impact upon both laboratories (cytogenetic and molecular genetics in the first instance) and clinical/medical genetic services. The interpretation of analytical results in terms of their clinical relevance and the predicted health status poses a challenge to both laboratory and clinical geneticists, due to the wealth and complexity of the information obtained. There is a need to discuss how to best restructure the genetic services logistically and to determine the clinical utility of genetic testing so that patients can receive appropriate advice and genetic testing. To weigh up the questions and challenges of the new genetic technologies, the European Society of Human Genetics (ESHG) held a series of workshops on 10 June 2010 in Gothenburg. This was part of an ESHG satellite symposium on the ‘Changing landscape of genetic testing', co-organized by the ESHG Genetic Services Quality and Public and Professional Policy Committees. The audience consisted of a mix of geneticists, ethicists, social scientists and lawyers. In this paper, we summarize the discussions during the workshops and present some of the identified ways forward to improve and adapt the genetic services so that patients receive accurate and relevant information. This paper covers ethics, clinical utility, primary care, genetic services and the blurring boundaries between healthcare and research. PMID:22453292

  16. Of wholes and parts: A Thomistic refutation of “Brain Death”

    PubMed Central

    Accad, Michel

    2015-01-01

    I propose a refutation of the two major arguments that support the concept of “brain death” as an ontological equivalent to death of the human organism. I begin with a critique of the notion that a body part, such as the brain, could act as “integrator” of a whole body. I then proceed with a rebuttal of the argument that destruction of a body part essential for rational operations—such as the brain—necessarily entails that the remaining whole is indisposed to accrue a rational soul. Next, I point to the equivocal use of the terms “alive” or “living” as being at the root of conceptual errors about brain death. I appeal to the Thomistic definition of life and to the hylomorphic concept of “virtual presence” to clarify this confusion. Finally, I show how the Thomistic definition of life supports the traditional criterion for the determination of death. Lay summary: By the mid-1960s, medical technology became available that could keep “alive” the bodies of patients who had sustained complete and irreversible brain injury. The concept of “brain death” emerged to describe such states. Physicians, philosophers, and ethicists then proposed that the state of brain death is equivalent to the state of death traditionally identified by the absence of spontaneous pulse and respiration. This article challenges the major philosophical arguments that have been advanced to draw this equivalence. PMID:26912932

  17. A Knowledge Base for Teaching Biology Situated in the Context of Genetic Testing

    NASA Astrophysics Data System (ADS)

    van der Zande, Paul; Waarlo, Arend Jan; Brekelmans, Mieke; Akkerman, Sanne F.; Vermunt, Jan D.

    2011-10-01

    Recent developments in the field of genomics will impact the daily practice of biology teachers who teach genetics in secondary education. This study reports on the first results of a research project aimed at enhancing biology teacher knowledge for teaching genetics in the context of genetic testing. The increasing body of scientific knowledge concerning genetic testing and the related consequences for decision-making indicate the societal relevance of such a situated learning approach. What content knowledge do biology teachers need for teaching genetics in the personal health context of genetic testing? This study describes the required content knowledge by exploring the educational practice and clinical genetic practices. Nine experienced teachers and 12 respondents representing the clinical genetic practices (clients, medical professionals, and medical ethicists) were interviewed about the biological concepts and ethical, legal, and social aspects (ELSA) of testing they considered relevant to empowering students as future health care clients. The ELSA suggested by the respondents were complemented by suggestions found in the literature on genetic counselling. The findings revealed that the required teacher knowledge consists of multiple layers that are embedded in specific genetic test situations: on the one hand, the knowledge of concepts represented by the curricular framework and some additional concepts (e.g. multifactorial and polygenic disorder) and, on the other hand, more knowledge of ELSA and generic characteristics of genetic test practice (uncertainty, complexity, probability, and morality). Suggestions regarding how to translate these characteristics, concepts, and ELSA into context-based genetics education are discussed.

  18. The justificatory power of moral experience.

    PubMed

    van Thiel, G J M W; van Delden, J J M

    2009-04-01

    A recurrent issue in the vast amount of literature on reasoning models in ethics is the role and nature of moral intuitions. In this paper, we start from the view that people who work and live in a certain moral practice usually possess specific moral wisdom. If we manage to incorporate their moral intuitions in ethical reasoning, we can arrive at judgements and (modest) theories that grasp a moral experience that generally cannot be found outside the practice. Reflective equilibrium (RE) provides a framework for balancing moral intuitions, ethical principles and general theories. Nevertheless, persisting problems associated with the use of intuitions need to be addressed. One is the objection that moral intuitions lack the credibility necessary to guide moral reasoning. Ethicists have tried to solve this problem by formulating criteria to separate the "bad" intuitions from the "good" ones at the beginning of the reasoning process. We call this the credible input-justified outcome strategy. An example is the appeal to the common morality by Beauchamp and Childress. We think this approach is unsuccessful. As an alternative, we outline the good reasoning-justified outcome strategy. It connects to a variant of RE in which intuitions from different sources are incorporated. We argue that the elements of RE have different levels of justificatory power at the start of reasoning. In our strategy, each element can gain or lose justificatory power when it is tested in a reasoning process that meets several criteria.

  19. Secondary use of empirical research data in medical ethics papers on gamete donation: forms of use and pitfalls.

    PubMed

    Provoost, Veerle

    2015-03-01

    This paper aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others (secondary use). Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the problems that can be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data (from a particular type of study) and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics.

  20. Adverse consequences of article 12 of the UN Convention on the Rights of Persons with Disabilities for persons with mental disabilities and an alternative way forward.

    PubMed

    Scholten, Matthé; Gather, Jakov

    2018-04-01

    It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  1. [Austrian guideline for palliative sedation therapy (long version) : Results of a Delphi process of the Austrian Palliative Society (OPG)].

    PubMed

    Weixler, Dietmar; Roider-Schur, Sophie; Likar, Rudolf; Bozzaro, Claudia; Daniczek, Thomas; Feichtner, Angelika; Gabl, Christoph; Hammerl-Ferrari, Bernhard; Kletecka-Pulker, Maria; Körtner, Ulrich H J; Kössler, Hilde; Meran, Johannes G; Miksovsky, Aurelia; Pusswald, Bettina; Wienerroither, Thomas; Watzke, Herbert

    2017-02-01

    Palliative sedation therapy (PST) is an important and ethically accepted therapy in the care of selected palliative care patients with otherwise unbearable suffering from refractory distress. PST is increasingly used in end-of-life care. Austria does not have a standardized ethical guideline for this exceptional practice near end of life, but there is evidence that practice varies throughout the country. The Austrian Palliative Society (OPG) nominated a multidisciplinary working group of 16 palliative care experts and ethicists who established the national guideline on the basis of recent review work with the aim to adhere to the Europeans Association of Palliative Care's (EAPC) framework on palliative sedation therapy respecting Austrians legal, structural and cultural background. Consensus was achieved by a four-step sequential Delphi process. The Delphi-process was strictly orientated to the recently published EUROIMPACT-sedation-study-checklist and to the AGREE-2-tool. Additionally national stakeholders participated in the reflection of the results. As a result of a rigorous consensus process the long version of the Austrian National Palliative Sedation Guideline contains 112 statements within eleven domains and is supplemented by a philosophers excursus on suffering. By establishing a national guideline for palliative sedation therapy using the Delphi technique for consensus and stakeholder involvement the Austrian Palliative Society aims to ensure nationwide good practice of palliative sedation therapy. Screening for the practicability and efficacy of this guideline will be a future task.

  2. The ethics of providing hope in psychotherapy.

    PubMed

    Dembo, Justine Sarah; Clemens, Norman A

    2013-07-01

    The instillation of hope is a common factor in most psychotherapies. A considerable literature exists on the ethics of providing false or positively biased hope in non-psychiatric medical settings, and ethicists have generally concluded that this practice is unethical. However, the literature on the ethics of encouraging hope in psychotherapy, especially in the case of treatment-resistant mental illness, is sparse. The author explores two clinical cases with the intention of examining the nature of hope, false hope, positive illusions, and denial, as they relate to our definitions of mental health and psychotherapy. The cases highlight the ethics of balancing an acknowledgment of likely treatment futility with a desire to hope. Clinical psychological studies on depressive realism and optimistic bias indicate that some degree of positive bias, referred to by some authors as "the optimal margin of illusion," is in fact necessary to promote what we define as "good mental health;" conversely, stark realism is correlated with mild to moderate depression. An examination of the existential literature, including Ernest Becker's work, The Denial of Death, indicates that without the defense mechanism of denial, human beings tend to experience paralytic despair as a result of being fallible, mortal creatures in a frightening world. The combination of these diverse bodies of literature, along with the surprising outcomes of our case examples, leads to an unexpected conclusion: it may occasionally be ethical to encourage some degree of optimistic bias, and perhaps even positive illusion, when treating patients in psychotherapy.

  3. Taking on organizational ethics. To do so, ethics committees must first prepare themselves.

    PubMed

    Weber, L J

    1997-01-01

    Healthcare ethics committees which have focused almost entirely on clinical ethics, now need to prepare to deal with organizational ethics, a field that is attracting increasing attention. As they did with clinical ethics, ethics committees members must educate themselves in the demands of the newer field. As before, they must respect the perspectives of the actual decision makers while maintaining an independent framework for analyzing the issues at stake. They must ensure that management is properly represented on the committee if they need guidance from a professional ethicist they should seek one with a strong background in business ethics and social justice. Healthcare organizations are likely to need help with a wide range of ethical issues involving patient services (rationing of resources, for example), business and service plans (mergers and joint ventures, for example), business and professional integrity (conflicts of interest, for example), employee rights and responsibilities (downsizing, for example), and the organization's role in in the community (advocacy and lobbying, for example). To be helpful to the organization, the ethics committee must be prepared to say when cost factors trump other considerations and when they do not. An ethics committee will often be asked to give advice on specific occasions-a proposed new policy, for instance. The most important part of its response is its analysis of the issue. Finally, an ethics committee should view its organization as part of the larger social context.

  4. How bioethics principles can aid design of electronic health records to accommodate patient granular control.

    PubMed

    Meslin, Eric M; Schwartz, Peter H

    2015-01-01

    Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was recently adopted by a team of informaticists who are designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and nonmaleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper, we show how using ethical principles can help in the design of EHRs by first explaining how ethical principles can and should be used generally, and then by discussing how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest.

  5. Great expectations: teaching ethics to medical students in South Africa.

    PubMed

    Behrens, Kevin Gary; Fellingham, Robyn

    2014-12-01

    Many academic philosophers and ethicists are appointed to teach ethics to medical students. We explore exactly what this task entails. In South Africa the Health Professions Council's curriculum for training medical practitioners requires not only that students be taught to apply ethical theory to issues and be made aware of the legal and regulatory requirements of their profession, it also expects moral formation and the inculcation of professional virtue in students. We explore whether such expectations are reasonable. We defend the claim that physicians ought to be persons of virtuous character, on the grounds of the social contract between society and the profession. We further argue that since the expectations of virtue of health care professionals are reasonable, it is also sound reasoning to expect ethics teachers to try to inculcate such virtues in their students, so far as this is possible. Furthermore, this requires of such teachers that they be suitable role models of ethical practice and virtue, themselves. We claim that this applies to ethics teachers who are themselves not members of the medical profession, too, even though they are not bound by the same social contract as doctors. We conclude that those who accept employment as teachers of ethics to medical students, where as part of their contractual obligation they are expected to inculcate moral values in their students, ought to be prepared to accept their responsibility to be professionally ethical, themselves. © 2013 John Wiley & Sons Ltd.

  6. Ethics, effectiveness and population health information interventions: a Canadian analysis.

    PubMed

    Greyson, Devon; Knight, Rod; Shoveller, Jean A

    2018-02-19

    Population health information interventions (PHIIs) use information in efforts to promote health. PHIIs may push information to a target audience (communication), pull information from the public (surveillance), or combine both in a bidirectional intervention. Although PHIIs have often been framed as non-invasive and ethically innocuous, in reality they may be intrusive into people's lives, affecting not only their health but their senses of security, respect, and self-determination. Ethical acceptability of PHIIs may have impacts on intervention effectiveness, potentially giving rise to unintended consequences. This article examines push, pull, and bidirectional PHIIs using empirical data from an ethnographic study of young mothers in Greater Vancouver, Canada. Data were collected from October 2013 to December 2014 via naturalistic observation and individual interviews with 37 young mothers ages 16-22. Transcribed interviews and field notes were analyzed using inductive qualitative thematic analysis. Both push and pull interventions were experienced as non-neutral by the target population, and implementation factors on a structural and individual scale affected intervention ethics and effectiveness. Based on our findings, we suggest that careful ethical consideration be applied to use of PHIIs as health promotion tools. Advancing the 'ethics of PHIIs' will benefit from empirical data that is informed by information and computer science theory and methods. Information technologies, digital health promotion services, and integrated surveillance programs reflect important areas for investigation in terms of their effects and ethics. Health promotion researchers, practitioners, and ethicists should explore these across contexts and populations.

  7. Honeymoon, medical treatment or big business? An analysis of the meanings of the term “reproductive tourism” in German and Israeli public media discourses

    PubMed Central

    2013-01-01

    Background/Introduction Infertile couples that travel to another country for reproductive treatment do not refer to themselves as “reproductive tourists”. They might even be offended by this term. “Tourism” is a metaphor with hidden connotations. We will analyze these connotations in public media discourses on “reproductive tourism” in Israel and Germany. We chose to focus on these two countries since legal, ethical and religious restrictions give couples a similar motivation to travel for reproductive care, while the cultural backgrounds and conceptions of reproduction are different. Results Our research shows that the use of the metaphor “reproductive treatment” and its hidden messages depends on the writers’ intention and the target population. Although the phenomenon of patients travelling for reproductive treatment can fit into the definitions of tourism, the term emphasizes aspects that do not reflect patients’ reality. In both the German and the Israeli public media debate the term “reproductive tourism” is either used to criticize the economic aspects of the phenomenon or to attract patients as potential clients. Conclusions Ethicists should be cautious when borrowing metaphors like “reproductive tourism” from the public debate. Our findings support Penning’s suggestion to use instead an unloaded term like cross-border reproductive care to describe the phenomenon in a more neutral way and to make it explicit whenever criticism is necessary. PMID:23962355

  8. Stem cells, embryos, and the environment: a context for both science and ethics.

    PubMed

    Towns, C R; Jones, D G

    2004-08-01

    Debate on the potential and uses of human stem cells tends to be conducted by two constituencies-ethicists and scientists. On many occasions there is little communication between the two, with the result that ethical debate is not informed as well as it might be by scientific insights. The aim of this paper is to highlight those scientific insights that may be of relevance for ethical debate. Environmental factors play a significant role in identifying stem cells and their various subtypes. Research related to the role of the microenvironment has led to emphasis upon "plasticity", which denotes the ability of one type of stem cell to undergo a transition to cells from other lineages. This could increase the value given to adult stem cells, in comparison with embryonic stem cell research. Any such conclusion should be treated with caution, however, since optimism of this order is not borne out by current research. The role of the environment is also important in distinguishing between the terms totipotency and pluripotency. We argue that blastocysts (early embryos) and embryonic stem cells are only totipotent if they can develop within an appropriate environment. In the absence of this, they are merely pluripotent. Hence, blastocysts in the laboratory are potentially totipotent, in contrast to their counterparts within the human body which are actually totipotent. This may have implications for ethical debate, suggesting as it does that arguments based on potential for life may be of limited relevance.

  9. Higher Priced Older Pharmaceuticals: How Should We Respond?

    PubMed

    Irwin, Richard S; Manaker, Scott; Metersky, Mark L; Baughman, Robert P; Otulana, Tunde; Weinberger, Steven E; Sussman, Andrew J; McGrath, Norine A

    2018-01-01

    We and our patients have been aware of the high cost of medications in the United States for decades; however, we are now witnessing a relatively new phenomenon: exponential price increases for some older pharmaceuticals that have been available for years. To assist practitioners in how to respond to the issue of higher priced pharmaceuticals, an interprofessional session was developed and held at CHEST 2016 in Los Angeles. The session proceedings and a few updates are presented here to summarize what pulmonologists; a sarcoidosis expert; a retired executive of a medical society, an executive of a pharmaceutical company and of a pharmacy; and an ethicist advise that we do about the problem. Because the comments presented at the session and in this manuscript represent the opinions of each author, this commentary in essence is a compilation of nine editorials. It does not represent a comprehensive discussion of the field of pricing of drugs. In reflecting upon the answers to the questions posed, and regardless of their sector of health care, all participants stated that they focused on the patient. However, actually providing patient-focused care (ie, the care defined from the patient's perspective) is another matter. To significantly improve patient satisfaction and health-care outcomes, patient-focused care needs to embody the 3 Cs of (1) communication, (2) continuity of care, and (3) concordance of expectations (ie, finding the common ground). Therefore, we discuss how the 3 Cs apply to responses to higher priced pharmaceuticals. Copyright © 2017 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.

  10. The Ethics of Human Spaceflight

    NASA Technical Reports Server (NTRS)

    Zoloth, Laurie

    2005-01-01

    This chapter intends to lay out some essential ethics questions that might frame the next step of space exploration. In this, I undertake two sorts of tasks. The first is to respond to the core ethic question: Is it ethical to travel in space? The second, assuming for the moment that I can convince you that the first premise can be justified, is to comment on what ethical challenges will face us there. It is appropriate to have a philosopher comment on this at the fortieth anniversary celebration, since it was also in 1962 that the National Academy of Science first convened a panel of philosophers to comment on space travel. They asked at that time whether it was indeed a worthwhile pursuit to travel in space and what might be expected of such an effort. What is at stake in any such boundary crossing is how the changing of essential human perimeters changes our own moral status. Will such boundary crossing worsen our human condition, or will it enhance it? In this way, the geopolitical quest is then linked to the quest for ontology, Pisarro hunting for the fountain of youth, for gold, and for territory. What follows are a series of ethical claims that link the problem of discovery in the larger world and the attendant ethical dilemmas of our explorations, as well as how this exploration alters our concepts of life on Earth. In this, the role of the ethicist is to function as both a skeptic and a stranger, aware of the optimism of science and the pessimism of philosophy.

  11. Refining moral agency: Insights from moral psychology and moral philosophy.

    PubMed

    Milliken, Aimee

    2018-01-01

    Research in moral psychology has recently raised questions about the impact of context and the environment on the way the human mind works. In a 2012 call to action, Paley wrote: "If some of the conclusions arrived at by moral psychologists are true, they are directly relevant to the way nurses think about moral problems, and present serious challenges to favoured concepts in nursing ethics, such as the ethics of care, virtue, and the unity of the person" (p. 80). He urges nurse ethicists and scholars to evaluate the impact these findings may have for moral theory. In this paper, I review some of Paley's (Nursing Philosophy, 13, 2012, 80) critique, focusing on the argument that theories of nursing ethics have failed to account for the role of context; both in terms of its impact on the way nurses make moral judgements and in terms of the environment's influence on the way the mind works. I then examine nursing literature on moral agency, and focus on the role of the environment and context play within existing theory. I argue that theories of moral agency have often accounted for the role of context on the way nurses make decisions; however, less attention has been paid to its impact on the mind. With this background, I use insights from the fields of moral philosophy and moral psychology to refine the conceptualization of nurse moral agency in a way that is reflective of current cognitive, philosophical and nursing practice-based science. © 2017 John Wiley & Sons Ltd.

  12. Obstetrician-gynaecologists' opinions about conscientious refusal of a request for abortion: results from a national vignette experiment.

    PubMed

    Rasinski, Kenneth A; Yoon, John D; Kalad, Youssef G; Curlin, Farr A

    2011-12-01

    Conscientious refusal of abortion has been discussed widely by medical ethicists but little information on practitioners' opinions exists. The American College of Obstetricians and Gynecologists (ACOG) issued recommendations about conscientious refusal. We used a vignette experiment to examine obstetrician-gynecologists' (OB/GYN) support for the recommendations. A national survey of OB/GYN physicians contained a vignette experiment in which an OB/GYN doctor refused a requested elective abortion. The vignette varied two issues recently addressed by the ACOG ethics committee--whether the doctor referred and whether the doctor disclosed their objection to the abortion. 1800 OB/GYN randomly selected physicians were asked to complete a mail survey containing the vignette. The response rate was 66% (n=1154) after excluding 40 ineligible cases. Physicians indicated their approval for the vignette doctor's decision. Overall, 43% of OB/GYN physicians responded that the conscientious refusal exercised by the vignette physician was appropriate. 70% rated the vignette doctor as acting appropriately when a referral was made. This dropped to 51% when the doctor disclosed objections to the patient, and to 12% when the doctor disclosed objections and refused to make a referral. Consistent with previous research, males were more likely to support disclosure and refusal to refer. Highly religious physicians supported non-referral but not disclosure. OB/GYN physicians are less likely to support conscientious refusal of abortion if physicians disclose their objections to patients. This is at odds with ACOG recommendations and with some models of the doctor-patient relationship.

  13. Perspectives of Transplant Professionals on the Values, Ethics, and Challenges of Living Kidney Donor Evaluation in Asia.

    PubMed

    Tong, Allison; Chapman, Jeremy R; Kee, Terence; Li, Philip K T; Tsai, Daniel F C; Wong, Germaine; Craig, Jonathan C

    2015-07-01

    Deceased donor rates in Asia are among the lowest in the world. This has necessitated a reliance on living kidney donation, which has given rise to concerns about donor motivation and assessment in this region. We aimed to describe transplant professional perspectives on living kidney donor evaluation in Asia. Face-to-face, semistructured interviews were conducted with 53 transplant professionals (nephrologists [n = 21], surgeons/urologists [n = 17], coordinators [n = 7], social workers [n = 5], ethicists [n = 2], psychologist [n = 1]) from 20 centers in 10 countries. Transcripts were analyzed thematically to identify themes. The theme of traversing vulnerability overarched 4 themes. Vigilance against exploitation of the vulnerable meant mitigating the threat of commercial transplantation, combating disparities, and verifying volunteerism. Maintaining clarity of professional roles encompassed the perceived necessity of legal safeguards to determine legitimacy of relationships, ensuring informed consent, demarcating responsibilities, minimizing conflict of interest, meeting community expectations, and resolving ambivalence regarding donor risk. Societal plight driving caution about living kidney donor assessment was emphasized in the context of poverty and desperation, higher risk of disease, and lack of social security. Navigating sociocultural barriers acknowledged the centrality of the family, economic priorities, distrust in modern medicine, generational traditions, and emotional opacity limiting their ability to gauge donor motivation. Moral, professional, sociocultural and societal vulnerabilities contribute to the barriers and ethical quandaries in living kidney donation in Asia. Strategies are needed to address culturally based anxieties and disparities in living donation. Transplant professionals depend on strong legislation and policies to prevent exploitation of living donors.

  14. Neonatal and Pediatric Organ Donation: Ethical Perspectives and Implications for Policy.

    PubMed

    Sarnaik, Ajit A

    2015-01-01

    The lifesaving processes of organ donation and transplantation in neonatology and pediatrics carry important ethical considerations. The medical community must balance the principles of autonomy, non-maleficence, beneficence, and justice to ensure the best interest of the potential donor and to provide equitable benefit to society. Accordingly, the US Organ Procurement and Transplantation Network (OPTN) has established procedures for the ethical allocation of organs depending on several donor-specific and recipient-specific factors. To maximize the availability of transplantable organs and opportunities for dying patients and families to donate, the US government has mandated that hospitals refer potential donors in a timely manner. Expedient investigation and diagnosis of brain death where applicable are also crucial, especially in neonates. Empowering trained individuals from organ procurement organizations to discuss organ donation with families has also increased rates of consent. Other efforts to increase organ supply include recovery from donors who die by circulatory criteria (DCDD) in addition to donation after brain death (DBD), and from neonates born with immediately lethal conditions such as anencephaly. Ethical considerations in DCDD compared to DBD include a potential conflict of interest between the dying patient and others who may benefit from the organs, and the precision of the declaration of death of the donor. Most clinicians and ethicists believe in the appropriateness of the Dead Donor Rule, which states that vital organs should only be recovered from people who have died. The medical community can maximize the interests of organ donors and recipients by observing the Dead Donor Rule and acknowledging the ethical considerations in organ donation.

  15. Freedom of Choice About Incidental Findings Can Frustrate Participants' True Preferences.

    PubMed

    Viberg, Jennifer; Segerdahl, Pär; Langenskiöld, Sophie; Hansson, Mats G

    2016-03-01

    Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic. In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice. Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information. © 2015 John Wiley & Sons Ltd.

  16. [The world of medicine encounters the world of halakha--the great medical halakhist and Israel Prize awardee Rabbi Eliezer Waldenberg (1915-2006)].

    PubMed

    Strous, Rael D; Shenkelowsky, Eliezer

    2008-01-01

    Recently, one of the most important medical halakhists of all time, Rabbi Eliezer Yehuda Waldenberg died. He was affectionately known as the Tzitz Eliezer after his monumental halakhic treatise of that name. He was a leading rabbi, a judge on the Supreme Rabbinical Court in Jerusalem, and an eminent authority on medical halakha. He also served as the rabbi of the Shaare Zedek Medical Center in Jerusalem for many years prior to his death. His most important body of work, the Tzitz Eliezer, is a treatise of medical halakhic questions and many consider it as one of the great achievements of halakhic scholarship of the 20th century. Although he has written in all fields of halakha in general and medicine in particular, he is best known for his verdicts on physician responsibility, fertility, abortion, smoking, medicine on the Sabbath, organ transplantation, cosmetic surgery and determination of death. While some of his decisions on medical issues have proven controversial, they reflect scholarship and sensitivity and are respected by ethicists and clergy across the board. In 1976 he received the Israel Prize, the nation's highest honor, for Torah literature. His greatness lay in his ability to connect and gain respect across the board of the worlds of modern medicine and halakhic Judaism. Many of his decisions are today considered as routine and standard operating procedure, but, at the time, his definitions were considered new and original. He will be sorely missed by the medical and halakhic communities.

  17. Ethics in reproductive genetics.

    PubMed

    Fletcher, J C; Evans, M I

    1992-12-01

    Ethics in reproductive genetics comprise descriptive ethics and normative ethics. Ethical problems before prenatal diagnosis involve genetic counseling and informed consent for the choice patients must make. Prenatal diagnosis using amniocentesis is controversial. An international survey of geneticists showed that 25% would do prenatal diagnosis for sex selection, and 17% would refer the couple elsewhere. Hungary (60%), India (37%), the US (34%), Canada (30%), Greece (29%), and Sweden (28%) would do prenatal diagnosis. The statistical incidence of positive findings after prenatal diagnosis does not exceed 4% of all cases when most couples choose abortion. Respect for parental choice and for nondirective counseling was supported in responses to 3 cases in the international survey that also had disclosure dilemmas included with abortion choices. 84% of respondents would be nondirective for XYY and 88% for XO. In India, Hungary, Turkey, and Norway, 46%, 40%, 40%, and 33%, respectively, would advise aborting an XO (Turner) fetus. A survey of 737 genetics and obstetricians and ethicists and clergy showed acceptability of abortion in singleton pregnancies and in twins associated strongly with the trimester of pregnancy, indication for selective termination, and fetal number. Prior group review of risks and benefits of experimental fetal therapy, case selection for experimental fetal therapy, the optimal informed-consent process for fetal therapy, twin pregnancies, refusal of proven fetal therapy, the lack of federal support for research in fetal diagnosis (preimplantation embryo diagnosis) and therapy, and sources of a moral obligation are also addressed. The Belmont Report on the ethics of biomedical research in the US proposed ethical principles to guide research with human subjects including the fetus: respect for parsons, beneficence, and justice.

  18. Neonatal and Pediatric Organ Donation: Ethical Perspectives and Implications for Policy

    PubMed Central

    Sarnaik, Ajit A.

    2015-01-01

    The lifesaving processes of organ donation and transplantation in neonatology and pediatrics carry important ethical considerations. The medical community must balance the principles of autonomy, non-maleficence, beneficence, and justice to ensure the best interest of the potential donor and to provide equitable benefit to society. Accordingly, the US Organ Procurement and Transplantation Network (OPTN) has established procedures for the ethical allocation of organs depending on several donor-specific and recipient-specific factors. To maximize the availability of transplantable organs and opportunities for dying patients and families to donate, the US government has mandated that hospitals refer potential donors in a timely manner. Expedient investigation and diagnosis of brain death where applicable are also crucial, especially in neonates. Empowering trained individuals from organ procurement organizations to discuss organ donation with families has also increased rates of consent. Other efforts to increase organ supply include recovery from donors who die by circulatory criteria (DCDD) in addition to donation after brain death (DBD), and from neonates born with immediately lethal conditions such as anencephaly. Ethical considerations in DCDD compared to DBD include a potential conflict of interest between the dying patient and others who may benefit from the organs, and the precision of the declaration of death of the donor. Most clinicians and ethicists believe in the appropriateness of the Dead Donor Rule, which states that vital organs should only be recovered from people who have died. The medical community can maximize the interests of organ donors and recipients by observing the Dead Donor Rule and acknowledging the ethical considerations in organ donation. PMID:26636051

  19. Ethical challenges that arise at the community interface of health research: village reporters' experiences in Western Kenya.

    PubMed

    Chantler, Tracey; Otewa, Faith; Onyango, Peter; Okoth, Ben; Odhiambo, Frank; Parker, Michael; Geissler, Paul Wenzel

    2013-04-01

    Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters' (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. © 2013 Blackwell Publishing Ltd.

  20. On the fragility of medical virtue in a neoliberal context: the case of commercial conflicts of interest in reproductive medicine.

    PubMed

    Mayes, Christopher; Blakely, Brette; Kerridge, Ian; Komesaroff, Paul; Olver, Ian; Lipworth, Wendy

    2016-02-01

    Social, political, and economic environments play an active role in nurturing professional virtue. Yet, these environments can also lead to the erosion of virtue. As such, professional virtue is fragile and vulnerable to environmental shifts. While physicians are often considered to be among the most virtuous of professional groups, concern has also always existed about the impact of commercial arrangements on physicians' willingness and capacity to enact their professional virtues. This article examines the ways in which commercial arrangements have been negotiated to secure medical virtue from real or perceived threats of erosion. In particular, we focus on the concern surrounding conflicts of interest arising from commercial arrangements that have developed as a result of neoliberal economic and social policies. The deregulation of medical markets and privatization of services have produced new commercial relationships that are often misunderstood by patients, publics, and physicians themselves. 'Conflicts of interest' policies have been introduced in an attempt to safeguard ethical conduct and medical practice. However, a number of virtue ethicists have critiqued these policies as inadequate for securing virtue. We examine the ways in which commercial arrangements have been seen to impact upon medical virtue, both historically and in the context of modern medicine (using the example of fertility services in Australia). We then describe and critique current efforts to restore clinical virtue through both conflict of interest policies and through virtue ethics. Finally, we suggest some possible ways of addressing the corrosive effects of neoliberalism on medical virtue.

  1. Genes, Race and Research Ethics: Who’s Minding the Store?

    PubMed Central

    Hunt, Linda M.; Megyesi, Mary S.

    2015-01-01

    BACKGROUND The search for genetic variants between racial/ethnic groups to explain differential disease susceptibility and drug response has provoked sharp criticisms, challenging the appropriateness of using race/ethnicity as a variable in genetics research, because such categories are social constructs and not biological classifications. OBJECTIVES To gain insight into how a group of genetic scientists conceptualize and use racial/ethnic variables in their work, and their strategies for managing the ethical issues and consequences of this practice. METHODS In-depth semi-structured interviews were conducted with a purposive sample of 30 genetic researchers who use racial/ethnic variables in their research. Standard qualitative methods of content analysis were used. RESULTS Most of the genetic researchers viewed racial/ethnic variables as arbitrary and very poorly defined, and in turn as scientifically inadequate. However, most defended their use, describing them as useful proxy variables on a road to Imminent Medical Progress. None had developed overt strategies for addressing these inadequacies, with many instead asserting that science will inevitably correct itself, and saying that meanwhile researchers should “be careful” in the language chosen for reporting findings. CONCLUSIONS While the legitimacy and consequences of using racial/ethnic variables in genetics research has been widely criticized, ethical oversight is left to genetic researchers themselves. Given the general vagueness and imprecision we found amongst these researchers regarding their use of these variables, they do not seem well equipped for such an undertaking. It would seem imperative that research ethicist move forward to develop specific policies and practices to assure the scientific integrity of genetic research on biological differences between population groups. PMID:18511627

  2. Barriers and facilitators influencing ethical evaluation in health technology assessment.

    PubMed

    Assasi, Nazila; Schwartz, Lisa; Tarride, Jean-Eric; O'Reilly, Daria; Goeree, Ron

    2015-01-01

    The objective of this study was to explore barriers and facilitators influencing the integration of ethical considerations in health technology assessment (HTA). The study consisted of two complementary approaches: (a) a systematic review of the literature; and (b) an eighteen-item online survey that was distributed to fifty-six HTA agencies affiliated with the International Network of Agencies for Health Technology Assessment. The review identified twenty-six relevant articles. The most often cited barriers in the literature were: scarcity, heterogeneity and complexity of ethical analysis methods; challenges in translating ethical analysis results into knowledge that is useful for decision makers; and lack of organizational support in terms of required expertise, time and financial resources. The most frequently cited facilitators included: usage of value-based appraisal methods, stakeholder and public engagement, enhancement of practice guidelines, ethical expertise, and educational interventions. Representatives of twenty-six (46.5 percent) agencies from nineteen countries completed the survey. A median of 10 percent (interquartile range, 5 percent to 50 percent) of the HTA products produced by the agencies was reported to include an assessment of ethical aspects. The most commonly perceived barriers were: limited ethical knowledge and expertise, insufficient time and resources, and difficulties in finding ethical evidence or using ethical guidelines. Educational interventions, demand by policy makers, and involvement of ethicists in HTA were the most commonly perceived facilitators. Our results emphasize the importance of simplification of ethics methodology and development of good practice guidelines in HTA, as well as capacity building for engaging HTA practitioners in ethical analyses.

  3. "Media, politics and science policy: MS and evidence from the CCSVI Trenches".

    PubMed

    Pullman, Daryl; Zarzeczny, Amy; Picard, André

    2013-02-12

    In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment ("liberation therapy") received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public's call for action. We present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges. This story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making.

  4. The Culture of Faith and Hope: Patients’ Justifications for Their High Estimations of Expected Therapeutic Benefit When Enrolling in Early-Phase Oncology Trials

    PubMed Central

    Sulmasy, Daniel P.; Astrow, Alan B.; He, M. Kai; Seils, Damon M.; Meropol, Neal J.; Micco, Ellyn; Weinfurt, Kevin P.

    2013-01-01

    Purpose Patients’ estimates of their chances of therapeutic benefit from participation in early-phase trials greatly exceed historical data. Ethicists worry that this “therapeutic misestimation” undermines the validity of informed consent. Patients and Methods We interviewed 45 patients enrolled in phase I or II oncology trials about their expectations of therapeutic benefit and their reasons for those expectations. We employed a phenomenological, qualitative approach with one primary coder to identify emergent themes, verified by 2 independent coders. Results Median expectations of therapeutic benefit varied from 50% to 80%, depending on how the question was asked. Justifications universally invoked hope and optimism, and 27/45 participants used one of these words. Three major themes emerged: (1) optimism as performative, that is, the notion that positive thoughts and expressions improve chances of benefit; (2) fighting cancer as a battle; and (3) faith in God, science, or both. Many participants described a culture in which optimism was encouraged and expected, such that trial enrollment became a way of reflecting this expectation. Many reported they had been told few patients would benefit and appeared to understand the uncertainties of clinical research, yet expressed high expected personal therapeutic benefit. More distressed participants were less likely to invoke performative justifications for their expectations (50% vs 84%; P = .04). Conclusion Expressions of high expected therapeutic benefit had little to do with reporting knowledge and more to do with expressing optimism. These results have implications for understanding how to obtain valid consent from participants in early-phase clinical trials. PMID:20564120

  5. ETHICAL CHALLENGES THAT ARISE AT THE COMMUNITY INTERFACE OF HEALTH RESEARCH: VILLAGE REPORTERS' EXPERIENCES IN WESTERN KENYA

    PubMed Central

    Chantler, Tracey; Otewa, Faith; Onyango, Peter; Okoth, Ben; Odhiambo, Frank; Parker, Michael; Geissler, Paul Wenzel

    2013-01-01

    Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. PMID:23521822

  6. “Media, politics and science policy: MS and evidence from the CCSVI Trenches”

    PubMed Central

    2013-01-01

    Background In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public’s call for action. Discussion We present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges. Summary This story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making. PMID:23402260

  7. Do physicians have an ethical obligation to care for patients with AIDS?

    PubMed Central

    Angoff, N. R.

    1991-01-01

    This paper responds to the question: Do physicians have an ethical obligation to care for patients with acquired immunodeficiency syndrome (AIDS)? First, the social and political milieu in which this question arises is sampled. Here physicians as well as other members of the community are found declaring an unwillingness to be exposed to people with AIDS. Next, laws, regulations, ethical codes and principles, and the history of the practice of medicine are examined, and the literature as it pertains to these areas is reviewed. The obligation to care for patients with AIDS, however, cannot be located in an orientation to morality defined in rules and codes and an appeal to legalistic fairness. By turning to the orientation to morality that emerges naturally from connection and is defined in caring, the physicians' ethical obligation to care for patients with AIDS is found. Through an exploration of the writings of modern medical ethicists, it is clear that the purpose of the practice of medicine is healing, which can only be accomplished in relationship to the patient. It is in relationship to patients that the physician has the opportunity for self-realization. In fact, the physician is physician in relationship to patients and only to the extent that he or she acts virtuously by being morally responsible for and to those patients. Not to do so diminishes the physician's ethical ideal, a vision of the physician as good physician, which has consequences for the physician's capacity to care and for the practice of medicine. PMID:1788990

  8. Fertility preservation for non-medical reasons: controversial, but increasingly common.

    PubMed

    von Wolff, Michael; Germeyer, Ariane; Nawroth, Frank

    2015-01-16

    Fertility-preserving measures for women are increasingly being performed for non-medical reasons in Germany. This is now a controversial matter. The authors searched the PubMed database for pertinent publications on the basis of their clinical and scientific experience and evaluated relevant data from the registry of the German FertiPROTEKT network (www.fertiprotekt. com). The various fertility-preserving measures that are available are described and critically discussed. In most cases, the creation of a fertility reserve currently involves the cryopreservation of unfertilized oocytes, rather than of ovarian tissue. Most of the women who decide to undergo this procedure are over 35 years old. According to data from the FertiPROTEKT registry, most such procedures carried out in the years 2012 and 2013 involved a single stimulation cycle. The theoretical probability of childbirth per stimulation is 40% in women under age 35 and 30% in women aged 35 to 39. If the oocytes are kept for use at a later date, rather than at once, the maternal risk is higher, because the mother is older during pregnancy. The risk to the child may be higher as well because of the need for in vitro fertilization (IVF). Pregnancy over age 40 often leads to complications such as gestational diabetes and pre-eclampsia. IVF may be associated with a higher risk of epigenetic abnormalities. Ethicists have upheld women's reproductive freedom while pointing out that so-called social freezing merely postpones social problems, rather than solving them. Fertility preservation for non-medical reasons should be critically discussed, and decisions should be made on a case-by-case basis.

  9. Ethical implications of HIV self-testing: the game is far from being over.

    PubMed

    Bain, Luchuo Engelbert; Ditah, Chobufo Muchi; Awah, Paschal Kum; Ekukwe, Nkoke Clovis

    2016-01-01

    The use of combined Anti-Retroviral Therapy (cART) has been revolutionary in the history of the fight against HIV-AIDS, with remarkable reductions in HIV associated morbidity and mortality. Knowing one's HIV status early, not only increases chances of early initiation of effective, affordable and available treatment, but has lately been associated with an important potential to reduce disease transmission. A public health priority lately has been to lay emphasis on early and wide spread HIV screening. With many countries having already in the market over the counter self-testing kits, the ethical question whether self-testing in HIV with such kits is acceptable remains unanswered. Many Western authors have been firm on the fact that this approach enhances patient autonomy and is ethically grounded. We argue that the notion of patient autonomy as proposed by most ethicists assumes perfect understanding of information around HIV, neglects HIV associated stigma as well as proper identification of risky situations that warrant an HIV test. Putting traditional clinic based HIV screening practice into the shadows might be too early, especially for developing countries and potentially very dangerous. Encouraging self-testing as a measure to accompany clinic based testing in our opinion stands as main precondition for public health to invest in HIV self-testing. We agree with most authors that hard to reach risky groups like men and Men Who Have Sex with Men (MSM) are easily reached with the self-testing approach. However, linking self-testers to the medical services they need remains a key challenge, and an understudied indispensable obstacle in making this approach to obtain its desired goals.

  10. Millions of missing girls: from fetal sexing to high technology sex selection in India.

    PubMed

    George, Sabu M

    2006-07-01

    The morality and acceptability of using prenatal diagnosis for sex selection is being extensively debated around the world as advances in assisted reproductive technologies (ART) and embryology have enabled selective implantation of embryos of the desired sex (George and Dahiya, 1998; Savulescu, 1999; Raphael, 2002; Harris, 2005; Robertson, 2005; Snider, 2005). Sophisticated methods of separation of semen, originally developed for cattle breeding, are being used for human sex selection. Recently, non-invasive methods of fetal sex determination in the first trimester (from 6 weeks) of pregnancy have also emerged (Hahn and Chitty, 2005). Market forces that promote sex selection along with libertarian ideologues have assisted in blurring the ethical limits (Paul, 2001; President's Council on Bioethics, 2003). The widespread misuse of sex selection for eliminating girls before birth in India and among the Indian diaspora needs to be brought into the global 'intellectual discourse'. It is imperative that Western ethicists recognize the genocidal nature of sex selection taking place in certain Asian countries. Even if they believe that these trends will not affect mainstream Western societies, the promotion or tolerance of sex selection amounts to a 'crime of silence' against this ongoing genocide in China and India. I have been concerned with issues of the girl child in India for over two decades and sex selection among Asian Indians in North America (George et al., 1992; George et al., 1993; George and Dahiya, 1998). This article examines the missing millions of girls, but will not consider the 1980s campaign against fetal sex determination, Indian feminists' recognition of sex selection as violence against women (unlike several Western feminists, Moazam, 2004), or the Government's response to regulate prenatal diagnostic techniques in 1994 (George and Dahiya, 1998; George, 2002). Copyright 2006 John Wiley & Sons, Ltd.

  11. 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.

  12. Observations on the 2016 World Congress on Continuing Professional Development: Advancing Learning and Care in the Health Professions.

    PubMed

    Turco, Mary G; Baron, Robert B

    2016-01-01

    The 2016 World Congress on Continuing Professional Development: Advancing Learning and Care in the Health Professions took place in San Diego, California, March 17-19, 2016. Hosts were the Association for Hospital Medical Education (AHME), Alliance for Continuing Education in the Health Professionals (ACEhp), and Society for Academic Continuing Medical Education (SACME). The target audience was the international community working to improve medical (CME), nursing (CNE), pharmacy (CPE), and interprofessional (CIPE) continuing education (CE) and continuing professional development (CPD). Goals included: addressing patients' concerns and needs; advancing global medical and interprofessional health sciences education; utilizing learning to address health disparities; and promoting international cooperation. The five keynote speakers were: patient advocate Alicia Cole ("Why What We Do Matters: The Patients Voice"); linguist Lorelei Lingard ("Myths about Healthcare Teamwork and Their Implications for How We Understand Competence"); futurist and philosopher Alex Jadad ("What Do We Need to Protect at All Costs in the 21st Century?"); ethicist and change agent Zeke Emanuel ("Learn to Change: Teaching Toward a Shifting Healthcare Horizon"); and technology innovator Stephen Downes ("From Individual to Community: The Learning Is in the Doing"). Organizers announced the new Dave Davis Distinguished Award for Excellence in Mentorship in Continuing Professional Development to honor the career of David Davis, MD, in CME/CPD scholarship in Canada, the United States, and beyond. Participants valued the emphasis on interprofessional education and practice, the importance of integrating the patient voice, the effectiveness of flipped classroom methods, and the power of collective competency theories. Attendee-respondents encouraged Congress planners to continue to strive for a broad global audience and themes of international interest.

  13. Geoethics and the Role of Professional Geoscience Societies

    NASA Astrophysics Data System (ADS)

    Kieffer, S. W.; Palka, J. M.; Geissman, J. W.; Mogk, D. W.

    2014-12-01

    Codes of Ethics (Conduct) for geoscientists are formulated primarily by professional societies and the codes must be viewed in the context of the Goals (Missions, Values) of the societies. Our survey of the codes of approximately twenty-five societies reveals that most codes enumerate principles centered on practical issues regarding professional conduct of individuals such as plagiarism, fabrication, and falsification, and the obligation of individuals to the profession and society at large. With the exception of statements regarding the ethics of peer review, there is relatively little regarding the ethical obligations of the societies themselves. In essence, the codes call for traditionally honorable behavior of individual members. It is striking, given that the geosciences are largely relevant to the future of Earth, most current codes of societies fail to address our immediate obligations to the environment and Earth itself. We challenge professional organizations to consider the ethical obligations to Earth in both their statements of goals and in their codes of ethics. Actions by societies could enhance the efforts of individual geoscientists to serve society, especially in matters related to hazards, resources and planetary stewardship. Actions we suggest to be considered include: (1) Issue timely position statements on topics in which there is expertise and consensus (some professional societies such as AGU, GSA, AAAS, and the AMS, do this regularly, yet others not at all.); (2) Build databases of case studies regarding geoethics that can be used in university classes; (3) Hold interdisciplinary panel discussions with ethicists, scientists, and policy makers at annual meetings; (4) Foster publication in society journals of contributions relating to ethical questions; and (5) Aggressively pursue the incorporation of geoethical issues in undergraduate and graduate curricula and in continuing professional development.

  14. An activist's argument that participant values should guide risk-benefit ratio calculations in HIV cure research.

    PubMed

    Evans, David

    2017-02-01

    The patient empowerment movement, spurred by AIDS activism in the 1980s, quickly evolved to encompass how study participants are considered and treated in clinical research. Initially, people fearing death of AIDS sought early access to experimental medications that had not undergone rigorous testing in hopes of extending their lives. Thirty years on, scientists are asking a different set of ethical questions about clinical research, this time in the pursuit of either a sterilising cure or long-term remission for HIV. Instead of hastening access to experimental drugs for the sickest, researchers are now testing interventions for eradicating or controlling the virus in typically very healthy HIV-positive individuals who have the most to lose from such interventions if something goes wrong. While clinical researchers and ethicists debate the merits and limits of this type of research they should avoid discounting altruistic motivations as a powerful factor in a prospective study participant's decisions to assume risks. My conversations with four men who participated in HIV cure studies confirmed the capacity of these people to make carefully considered decisions about risks and the sometimes substantial influence/sway of non-clinical benefits that may come from participation in cure-oriented research. Studies must undergo ethical and clinical review before proceeding, and not all participants of such studies will be able to weigh or understand risks and benefits as those profiled here. But respecting the self-agency of people living with HIV should be a goal in the design and conduct of cure 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/.

  15. A spoonful of care ethics: The challenges of enriching medical education.

    PubMed

    van Reenen, Eva; van Nistelrooij, Inge

    2017-01-01

    Nursing Ethics has featured several discussions on what good care comprises and how to achieve good care practices. We should "nurse" ethics by continuously reflecting on the way we "do" ethics, which is what care ethicists have been doing over the past few decades and continue to do so. Ethics is not limited to nursing but extends to all caring professions. In 2011, Elin Martinsen argued in this journal that care should be included as a core concept in medical ethical terminology because of "the harm to which patients may be exposed owing to a lack of care in the clinical encounter," specifically between doctors and patients. However, Martinsen leaves the didactical challenges arising from such a venture open for further enquiry. In this article, we explore the challenges arising from implementing care-ethical insights into medical education. Medical education in the Netherlands is investigated through a "care-ethical lens". This means exploring the possibility of enriching medical education with care-ethical insights, while at the same time discovering possible challenges emerging from such an undertaking. Participants and research context: This paper has been written from the academic context of a master in care ethics and policy. Ethical considerations: We have tried to be fair and respectful to the authors discussed and take a neutral stance towards the findings portrayed. Several challenges are identified, which we narrow down to two types: didactical and non-didactical. In order to overcome these challenges, we must not underestimate the possible resistance to a paradigm shift. Our efforts should mainly target the learning that takes place in the clinical phases of medical training and should be accompanied by the creation of awareness in healthcare practice.

  16. Empirically-derived Knowledge on Adolescent Assent to Pediatric Biomedical Research

    PubMed Central

    Brody, Janet L.; Annett, Robert D.; Turner, Charles; Dalen, Jeanne; Yoon, Yesel

    2013-01-01

    Background There has been a recent growth in empirical research on assent with pediatric populations, due in part, to the demand for increased participation of this population in biomedical research. Despite methodological limitations, studies of adolescent capacities to assent have advanced and identified a number of salient psychological and social variables that are key to understanding assent. Methods The authors review a subsection of the empirical literature on adolescent assent focusing primarily on asthma and cancer therapeutic research; adolescent competencies to assent to these studies; perceptions of protocol risk and benefit; the affects of various social context variables on adolescent research participation decision making; and the inter-relatedness of these psychological and social factors. Results Contemporary studies of assent, using multivariate methods and updated approaches to statistical modeling, have revealed the importance of studying the intercorrelation between adolescents’ psychological capacities and their ability to employ these capacities in family and medical decision-making contexts. Understanding these dynamic relationships will enable researchers and ethicists to develop assent procedures that respect the authority of parents, while at the same time accord adolescents appropriate decision-making autonomy. Conclusions Reviews of empirical literature on the assent process reveal that adolescents possess varying capacities for biomedical research participation decision making depending on their maturity and the social context in which the decision is made. The relationship between adolescents and physician-investigators can be used to attenuate concerns about research protocols and clarify risk and benefit information so adolescents, in concert with their families, can make the most informed and ethical decisions. Future assent researchers will be better able to navigate the complicated interplay of contextual and developmental factors and develop the empirical bases for research enrollment protocols that will support increased involvement of adolescents in biomedical research. PMID:23914304

  17. A basic decision-making approach to common ethical issues in consultation-liaison psychiatry.

    PubMed

    Wright, Mark T; Roberts, Laura Weiss

    2009-06-01

    Ethical dilemmas are found throughout the daily work of C-L psychiatrists. Unfortunately, most psychiatrists have no more training in ethics than their nonpsychiatric colleagues. Psychiatric consults spurred by ethical dilemmas can provoke anxiety in psychiatrists and leave anxious colleagues without the clear recommendations they seek. C-L psychiatrists, and probably all psychiatrists, need more training in clinical ethics. C-L psychiatrists do not need to become clinical ethicists, but competence in handling the ethical issues most commonly seen in C-L work is needed. The 2008 ABPN guidelines for specialists in psychosomatic medicine mention specific ethics topics important in C-L work, and ways of attaining competence in these areas have been discussed in the C-L literature. The four cases discussed here illustrate the high level of complexity often seen in situations in which ethical dilemmas arise in C-L psychiatry. Given the sometimes furious pace of hospital work, it can be easy for C-L psychiatrists to be seduced by the idea of the quick, focused consult that simply responds to a simple question with a simple answer. Because cases involving ethical dilemmas often involve multiple stakeholders, each with his or her own set of concerns, a brief consult focused only on the patient often leads to errors of omission. A wider approach, such as that suggested by the Four Topics Method, is needed to successfully negotiate ethical dilemmas. Busy C-L psychiatry services may struggle at first to find the time to do the type of global evaluations discussed here, but increasing familiarity with approaches such as the Four Topics Method should lead to quicker ways of gathering and processing the needed information.

  18. Trusting families: Responding to Mary Ann Meeker, "Responsive care management: family decision makers in advanced cancer".

    PubMed

    Nelson, James Lindemann

    2011-01-01

    Mary Ann Meeker's article admirably reminds readers that family members are involved in--or "responsively manage"--the care of relatives with severe illness in ways that run considerably beyond the stereotypes at play in many bioethical discussions of advance directives. Her observations thus make thinking about the role of families in healthcare provision more adequate to the facts, and this is an important contribution. There's reason to be worried, however, that one explicit aim of the article--to ease the standing anxieties that many clinicians and ethicists have about the reliability of family members as proxy decision makers--will be frustrated by its very success. Those already inclined to suspicion may tend to think that the more intricate and pervasive the ways in which families influence the healthcare decision making of their sick, the more chances they have for altering the connection between patients' interests and the actions of professional providers. To determine whether and when such alterations are something to be concerned about, we'll need to supplement a better grasp of the pertinent facts with a deeper sense of how human agency works and why we value it. We may also need some reminders about the defensibility of diverse moral understandings. Although both professionals and family members may profess an ethic that sets patients' interests above those of non-patients--as Meeker's own results suggest--any strict allegiance to such a framework may be more notional than normative--as her findings also hint. The actual working norms (among professionals, as well as within families) will likely be more complex, but not necessarily any the less defensible for that.

  19. Graduate Ethics Curricula for Future Geospatial Technology Professionals (Invited)

    NASA Astrophysics Data System (ADS)

    Wright, D. J.; Dibiase, D.; Harvey, F.; Solem, M.

    2009-12-01

    Professionalism in today's rapidly-growing, multidisciplinary geographic information science field (e.g., geographic information systems or GIS, remote sensing, cartography, quantitative spatial analysis), now involves a commitment to ethical practice as informed by a more sophisticated understanding of the ethical implications of geographic technologies. The lack of privacy introduced by mobile mapping devices, the use of GIS for military and surveillance purposes, the appropriate use of data collected using these technologies for policy decisions (especially for conservation and sustainability) and general consequences of inequities that arise through biased access to geospatial tools and derived data all continue to be challenging issues and topics of deep concern for many. Students and professionals working with GIS and related technologies should develop a sound grasp of these issues and a thorough comprehension of the concerns impacting their use and development in today's world. However, while most people agree that ethics matters for GIS, we often have difficulty putting ethical issues into practice. An ongoing project supported by NSF seeks to bridge this gap by providing a sound basis for future ethical consideration of a variety of issues. A model seminar curriculum is under development by a team of geographic information science and technology (GIS&T) researchers and professional ethicists, along with protocols for course evaluations. In the curricula students first investigate the nature of professions in general and the characteristics of a GIS&T profession in particular. They hone moral reasoning skills through methodical analyses of case studies in relation to various GIS Code of Ethics and Rules of Conduct. They learn to unveil the "moral ecologies" of a profession through actual interviews with real practitioners in the field. Assignments thus far include readings, class discussions, practitioner interviews, and preparations of original case studies. Curricula thus far are freely available via gisprofessionalethics.org.

  20. Putting Public Health Ethics into Practice: A Systematic Framework

    PubMed Central

    Marckmann, Georg; Schmidt, Harald; Sofaer, Neema; Strech, Daniel

    2015-01-01

    It is widely acknowledged that public health practice raises ethical issues that require a different approach than traditional biomedical ethics. Several frameworks for public health ethics (PHE) have been proposed; however, none of them provides a practice-oriented combination of the two necessary components: (1) a set of normative criteria based on an explicit ethical justification and (2) a structured methodological approach for applying the resulting normative criteria to concrete public health (PH) issues. Building on prior work in the field and integrating valuable elements of other approaches to PHE, we present a systematic ethical framework that shall guide professionals in planning, conducting, and evaluating PH interventions. Based on a coherentist model of ethical justification, the proposed framework contains (1) an explicit normative foundation with five substantive criteria and seven procedural conditions to guarantee a fair decision process, and (2) a six-step methodological approach for applying the criteria and conditions to the practice of PH and health policy. The framework explicitly ties together ethical analysis and empirical evidence, thus striving for evidence-based PHE. It can provide normative guidance to those who analyze the ethical implications of PH practice including academic ethicists, health policy makers, health technology assessment bodies, and PH professionals. It will enable those who implement a PH intervention and those affected by it (i.e., the target population) to critically assess whether and how the required ethical considerations have been taken into account. Thereby, the framework can contribute to assuring the quality of ethical analysis in PH. Whether the presented framework will be able to achieve its goals has to be determined by evaluating its practical application. PMID:25705615

  1. Proper care for the dying: a critical public issue.

    PubMed Central

    Crispell, K R; Gomez, C F

    1987-01-01

    The ability of the medical profession to sustain life, or more appropriately, to prolong dying, in patients with terminal illness, creates a most complex and controversial situation for all involved: the patient, if mentally alert; the patient's family; and the medical care team including physicians, nurses and attendants. This situation is especially complex in large acute care hospitals where medical and nursing students, residents and house officers receive advanced medical training. A major problem, prolonging the dying of the terminally ill, with its medical, legal, ethical and economic complexities now confronts American society. The problem is particularly acute in teaching hospitals, in which one finds a disproportionate number of terminally ill patients. The ability to work at these questions as a community rather than as adversaries will determine much about the ability of the health care system to respect the dignity and autonomy of those who seek aid and comfort when faced with serious illness and impending death. Better communication between the physicians, health care providers, the lawyers and ethicists must be developed in order to solve these problems. Over the next ten years society and our elected representatives will be making very demanding decisions about the use of the health dollar. One possible way to prevent increasing costs is to reach significant agreement on the proper care of the dying. Proper care for the dying is being considered, discussed, and evaluated by very thoughtful people. It is not governments which should decide who is to live or who is to die. There is the serious problem of the 'slippery slope' to euthanasia by omission if cost containment becomes the major force in formulating policy on the proper care of the dying. PMID:3612698

  2. The Disposable Author: How Pharmaceutical Marketing Is Embraced within Medicine's Scholarly Literature.

    PubMed

    Matheson, Alastair

    2016-07-01

    The best studies on the relationship between pharmaceutical corporations and medicine have recognized that it is an ambiguous one. Yet most scholarship has pursued a simpler, more saleable narrative in which pharma is a scheming villain and medicine its maidenly victim. In this article, I argue that such crude moral framing blunts understanding of the murky realities of medicine's relationship with pharma and, in consequence, holds back reform. My goal is to put matters right in respect to one critical area of scholarly interest, the medical journal publication. Pharma relies on peer advocacy to sell its wares to prescribing doctors. This is an arrangement in which clinicians' qualified colleagues, including "key opinion leaders," are recruited by pharmaceutical corporations and marketing agencies to deliver commercially expedient content to their professional fellows. Precisely how this practice works in the setting of publications is not well understood because ethicists studying the problem have made too much of the narrative of corporate villainy and medical victimhood. Accordingly, criticism of industry publications has been preoccupied with the crudely dishonest practices of ghostwriting, ghost authorship, and "ghost management," vices condemned as "dirty little secrets" perpetrated from "behind the scenes" with the connivance of academic "shills" or "guest authors," in contempt of standards set by the International Committee of Medical Journal Editors. This account is appealing, and yet it is wrong or, at the very least, seriously incomplete, with only limited relevance to the actualities of contemporary industry practices. In truth, many commercial publications are not developed in secret but fashioned within a culture of open collaboration, where academic authors make substantial, independent contributions; pharmaceutical companies are showcased rather than hidden; and medicine's editorial standards assist rather than impede the workings of commerce. © 2016 The Hastings Center.

  3. Recurrent themes in the history of the home use of electrical stimulation: Transcranial direct current stimulation (tDCS) and the medical battery (1870-1920).

    PubMed

    Wexler, Anna

    In recent years, neuroscientists and ethicists have warned of the dangers of the unsupervised home use of transcranial direct current stimulation (tDCS), in which individuals stimulate their own brains with low levels of electricity for self-improvement purposes. Although the home use of tDCS is often referred to as a novel phenomenon, in reality the late nineteenth and early twentieth century saw a proliferation of electrical stimulation devices for home use. In particular, the use of an object known as the medical battery bears a number of striking similarities to the modern-day use of tDCS. This article reviews a number of features thought to be unique to the present day home use of brain stimulation, with a particular focus on analogies between tDCS and the medical battery. Archival research was conducted at the Bakken Museum and at the American Medical Association's Historical Health Fraud Archives. Many of the features characterizing the contemporary home use tDCS-a do-it-yourself (DIY) movement, anti-medical establishment themes, conflicts between lay and professional usage-are a repetition of themes that occurred a century ago with regard to the medical battery. A number of features, however, seem to be unique to the present, such as the dominant discourse about risk and safety, the division between cranial and non-cranial stimulation, and utilization for cognitive enhancement purposes. Viewed in the long durée, the contemporary use of electrical stimulation at home is not a novel phenomenon, but rather the latest wave in a series of ongoing attempts by lay individuals to utilize electricity for therapeutic purposes. Copyright © 2016 Elsevier Inc. All rights reserved.

  4. Nocebo phenomena in medicine: their relevance in everyday clinical practice.

    PubMed

    Häuser, Winfried; Hansen, Ernil; Enck, Paul

    2012-06-01

    Nocebo phenomena are common in clinical practice and have recently become a popular topic of research and discussion among basic scientists, clinicians, and ethicists. We selectively searched the PubMed database for articles published up to December 2011 that contained the key words "nocebo" or "nocebo effect." By definition, a nocebo effect is the induction of a symptom perceived as negative by sham treatment and/or by the suggestion of negative expectations. A nocebo response is a negative symptom induced by the patient's own negative expectations and/or by negative suggestions from clinical staff in the absence of any treatment. The underlying mechanisms include learning by Pavlovian conditioning and reaction to expectations induced by verbal information or suggestion. Nocebo responses may come about through unintentional negative suggestion on the part of physicians and nurses. Information about possible complications and negative expectations on the patient's part increases the likelihood of adverse effects. Adverse events under treatment with medications sometimes come about by a nocebo effect. Physicians face an ethical dilemma, as they are required not just to inform patients of the potential complications of treatment, but also to minimize the likelihood of these complications, i.e., to avoid inducing them through the potential nocebo effect of thorough patient information. Possible ways out of the dilemma include emphasizing the fact that the proposed treatment is usually well tolerated, or else getting the patient's permission to inform less than fully about its possible side effects. Communication training in medical school, residency training, and continuing medical education would be desirable so that physicians can better exploit the power of words to patients' benefit, rather than their detriment.

  5. Financial incentives for cadaver organ donation: an ethical reappraisal.

    PubMed

    Arnold, Robert; Bartlett, Steven; Bernat, James; Colonna, John; Dafoe, Donald; Dubler, Nancy; Gruber, Scott; Kahn, Jeffrey; Luskin, Richard; Nathan, Howard; Orloff, Susan; Prottas, Jeffrey; Shapiro, Robyn; Ricordi, Camillo; Youngner, Stuart; Delmonico, Francis L

    2002-04-27

    A panel of ethicists, organ procurement organization executives, physicians, and surgeons was convened by the sponsorship of the American Society of Transplant Surgeons to determine whether an ethically acceptable pilot trial could be proposed to provide a financial incentive for a family to consent to the donation of organs from a deceased relative. An ethical methodology was developed that could be applied to any proposal for monetary compensation to elucidate its ethical acceptability. An inverse relationship between financial incentives for increasing the families' consent for cadaver donation that clearly would be ethically acceptable (e.g., a contribution to a charity chosen by the family or a reimbursement for funeral expenses) and those approaches that would more likely increase the rate of donation (e.g., direct payment or tax incentive) was evident. The panel was unanimously opposed to the exchange of money for cadaver donor organs because either a direct payment or tax incentive would violate the ideal standard of altruism in organ donation and unacceptably commercialize the value of human life by commodifying donated organs. However, a majority of the panel members supported reimbursement for funeral expenses or a charitable contribution as an ethically permissible approach. The panel concluded that the concept of the organ as a gift could be sustained by a funeral reimbursement or charitable contribution that conveyed the appreciation of society to the family for their donation. Depending on the amount of reimbursement provided for funeral expenses, this approach could be ethically distinguished from a direct payment, by their intrusion into the realm of altruism and voluntariness. We suggest that a pilot project be conducted to determine whether this kind of a financial incentive would be acceptable to the public and successful in increasing organ donation.

  6. Ethical and legal constraints to children’s participation in research in Zimbabwe: experiences from the multicenter pediatric HIV ARROW trial

    PubMed Central

    2012-01-01

    Background Clinical trials involving children previously considered unethical are now considered essential because of the inherent physiological differences between children and adults. An integral part of research ethics is the informed consent, which for children is obtained by proxy from a consenting parent or guardian. The informed consent process is governed by international ethical codes that are interpreted in accordance with local laws and procedures raising the importance of contextualizing their implementation. Findings In Zimbabwe the parental informed consent document for children participating in clinical research is modeled along western laws of ethics and requires that the parent or legally authorized representative provide consent on behalf of a minor. This article highlights the experiences and lessons learnt by Zimbabwean researchers in obtaining informed consent from guardians of orphaned children participating in a collaborative HIV clinical trial involving the Medical Research Council, United Kingdom and four centers, three of which are in Uganda. Researchers were faced with a situation where caregivers of orphaned children were not permitted to provide informed consent for trial participation. The situation contrasted with general clinical practice where consent for procedures on orphans is obtained from their caregivers who are not legal guardians. Conclusion The challenges faced in obtaining informed consent for orphans in this clinical trial underscores the need for the Zimbabwe ethics committee to develop an ethical and legal framework for pediatric research that is based on international guidelines while taking into account the cultural context. The Medical Research Council of Zimbabwe has since started the process that is expected to involve critical stakeholders namely the community including children, ethicists, the legal fraternity and researchers. PMID:22818109

  7. Improvement in kidney transplantation in the Balkans after the Istanbul Declaration: where do we stand today?

    PubMed Central

    Spasovski, Goce; Busic, Mirela; Delmonico, Francis

    2016-01-01

    Due to the limited access to kidney transplantation (KTx) in developing countries, desperate patients have engaged in the purchase and sale of kidneys. In 2004, the World Health Assembly urged member states to protect the poor and vulnerable from being exploited through practices of illegal organ trafficking that had become widespread throughout the world. In 2008, the international transplant community convened a summit of transplant professionals, legal experts and ethicists to combat organ trafficking, transplant tourism and transplant commercialism that resulted in the Declaration of Istanbul (DOI). The South-Eastern Europe Health Network (SEEHN) represents a nine country multigovernmental collaboration on health systems. The Regional Health Development Centre on Organ Donation and Transplant Medicine (RHDC) was established in 2011 in Croatia to facilitate cooperation among south-eastern European countries to improve organ transplantation within the Balkan region. Since 2011, a collaboration between the RHDC, the Custodian Group of the DOI (DICG) and SEEHN professionals has enhanced strategic planning and definition of country-specific action plan priorities on organ donation and transplantation. Data of kidney transplantation provided in this report show a significant increase in transplantation activities in a 4-year period in Macedonia, Moldova, Bosnia and Hercegovina, Romania and Montenegro. The success of the donation and transplantation programmes was influenced by the engagement of key professionals and the establishment of organizational infrastructure with the implementation of an appropriate funding model. In conclusion, the DOI has provided an ethical framework for engagement of health professionals from south-eastern European countries. The newly established SEEHN RHDC as a technical coordinating body greatly contributed in building institutional capacity and strengthening regional collaboration between health authorities and professionals within these countries for improvement of transplant activities in the Balkans. PMID:26798481

  8. Genetic drift. Overview of German, Nazi, and Holocaust medicine.

    PubMed

    Cohen, M Michael

    2010-03-01

    An overview of German, Nazi, and Holocaust medicine brings together a group of subjects discussed separately elsewhere. Topics considered include German medicine before and during the Nazi era, such as advanced concepts in epidemiology, preventive medicine, public health policy, screening programs, occupational health laws, compensation for certain medical conditions, and two remarkable guidelines for informed consent for medical procedures; also considered are the Nuremberg Code; American models for early Nazi programs, including compulsory sterilization, abusive medical experiments on prison inmates, and discrimination against black people; two ironies in US and Nazi laws; social Darwinism and racial hygiene; complicity of Nazi physicians, including the acts of sterilization, human experimentation, and genocide; Nazi persecution of Jewish physicians; eponyms of unethical German physicians with particular emphasis on Reiter, Hallervorden, and Pernkopf; eponyms of famous physicians who were Nazi victims, including Pick and van Creveld; and finally, a recommendation for convening an international committee of physicians and ethicists to deal with five issues: (a) to propose alternative names for eponyms of physicians who exhibited complicity during the Nazi era; (b) to honor the eponyms and stories of physicians who were victims of Nazi atrocities and genocide; (c) to apply vigorous pressure to those German and Austrian Institutes that have not yet undertaken investigations to determine if the bodies of Nazi victims remain in their collections; (d) to recommend holding annual commemorations in medical schools and research institutes worldwide to remember and to reflect on the victims of compromised medical practice, particularly, but not exclusively, during the Nazi era because atrocities and acts of genocide have occurred elsewhere; and (e) to examine the influence of any political ideology that compromises the practice of medicine. (c) 2010 Wiley-Liss, Inc

  9. Misconceptions of Synthetic Biology: Lessons from an Interdisciplinary Summer School

    NASA Technical Reports Server (NTRS)

    Verseux, Cyprien; Acevedo-Rocha, Carlos G.; Chizzolini, Fabio; Rothschild, Lynn J.

    2016-01-01

    In 2014, an international group of scholars from various fields analysed the "societal dimensions" of synthetic biology in an interdisciplinary summer school. Here, we report and discuss the biologists' observations on the general perception of synthetic biology by non-biologists who took part in this event. Most attendees mainly associated synthetic biology with contributions from the best-known public figures of the field, rarely mentioning other scientists. Media extrapolations of those contributions appeared to have created unrealistic expectations and irrelevant fears that were widely disconnected from the current research in synthetic biology. Another observation was that when debating developments in synthetic biology, semantics strongly mattered: depending on the terms used to present an application of synthetic biology, attendees reacted in radically different ways. For example, using the term "GMOs" (genetically modified organisms) rather than the term "genetic engineering" led to very different reactions. Stimulating debates also happened with participants having unanticipated points of view, for instance biocentrist ethicists who argued that engineered microbes should not be used for human purposes. Another communication challenge emerged from the connotations and inaccuracies surrounding the word "life", which impaired constructive debates, thus leading to misconceptions about the abilities of scientists to engineer or even create living organisms. Finally, it appeared that synthetic biologists tend to overestimate the knowledge of non-biologists, further affecting communication. The motivation and ability of synthetic biologists to communicate their work outside their research field needs to be fostered, notably towards policymakers who need a more accurate and technical understanding of the field to make informed decisions. Interdisciplinary events gathering scholars working in and around synthetic biology are an effective tool in addressing those issues.

  10. Predictors of hospitalised patients' preferences for physician-directed medical decision-making.

    PubMed

    Chung, Grace S; Lawrence, Ryan E; Curlin, Farr A; Arora, Vineet; Meltzer, David O

    2012-02-01

    Although medical ethicists and educators emphasise patient-centred decision-making, previous studies suggest that patients often prefer their doctors to make the clinical decisions. To examine the associations between a preference for physician-directed decision-making and patient health status and sociodemographic characteristics. Sociodemographic and clinical information from all consenting general internal medicine patients at the University of Chicago Medical Center were examined. The primary objectives were to (1) assess the extent to which patients prefer an active role in clinical decision-making, and (2) determine whether religious service attendance, the importance of religion, self-rated spirituality, Charlson Comorbidity Index, self-reported health, Vulnerable Elder Score and several demographic characteristics were associated with these preferences. Data were collected from 8308 of 11,620 possible participants. Ninety-seven per cent of respondents wanted doctors to offer them choices and to consider their opinions. However, two out of three (67%) preferred to leave medical decisions to the doctor. In multiple regression analyses, preferring to leave decisions to the doctor was associated with older age (per year, OR=1.019, 95% CI 1.003 to 1.036) and frequently attending religious services (OR=1.5, 95% CI 1.1 to 2.1, compared with never), and it was inversely associated with female sex (OR=0.6, 95% CI 0.5 to 0.8), university education (OR=0.6, 95% CI 0.4 to 0.9, compared with no high school diploma) and poor health (OR=0.6, 95% CI 0.3 to 0.9). Almost all patients want doctors to offer them choices and to consider their opinions, but most prefer to leave medical decisions to the doctor. Patients who are male, less educated, more religious and healthier are more likely to want to leave decisions to their doctors, but effects are small.

  11. Global Bioethics and Culture in a Pluralistic World: How does Culture influence Bioethics in Africa?

    PubMed Central

    Chukwuneke, FN; Umeora, OUJ; Maduabuchi, JU; Egbunike, N

    2014-01-01

    Bioethics principles and practice can be influenced by different cultural background. This is because the four globally accepted bioethics principles are often based on basic ethical codes such as autonomy, beneficence, nonmaleficence and justice. Beneficence/nonmaleficence requires us to maximize possible benefits, while minimizing possible harms and consequently secure the well-being of others by refraining from harming them. Autonomy gives individuals the right to self-actualization and decision-making, while justice is concerned with the fair selection and distribution of the burdens and benefits of research among participants. Applications of these principles in cultural settings vary more often from one cultural perspective to the other because of the different understanding and practices of “what is good.” The proponents of global ethics may argue that these principles should be universally generalizable and acceptable, but this is not possible because of the existing cultural diversities. In the African set-up, despite the existence of major common cultural practices, there are other norms and practices, which differ from one society to the other within the communities. Therefore, the word “global” bioethics may not be applicable generally in practice except if it can account for the structural dynamics and cultural differences within the complex societies in which we live in. However, the extent to which cultural diversity should be permitted to influence bioethical judgments in Africa, which at present is burdened with many diseases, should be of concern to researchers, ethicist and medical experts taking into considerations the constantly transforming global society. This topic examines the cultural influence on principles and practice of bioethics in Africa. PMID:25328772

  12. Counterpoint: physician-industry relationships can be ethically established, and conflicts of interest can be ethically managed.

    PubMed

    White, Andrew P; Vaccaro, Alexander R; Zdeblick, Thomas

    2007-05-15

    Review of the nature of conflicts of interest in physician-industry relationships, with a focus on the efforts to ethically manage physician-industry relationships. To illustrate the perspective that physician-industry relationships can be ethically established, and conflicts of interest can be ethically managed. The interest in considering the appropriateness of physician-industry relationships has recently become focused on spine surgery. Many of the conflicts of interest inherent to these relationships have been interpreted as problematic, and have been scrutinized by the media, industry, medical and legal professions, and Federal government. The basis for conflicts of interest, manner in which bias may be introduced, and methods to reduce bias are presented. The potential risks and benefits to patients that are inherent to physician-industry relationships are considered. A framework, developed by medical ethicists, is provided to guide analysis of conflicts of interest in physician-industry relationships. Collaboration between spine surgeons and industry is necessary to improve patient care. The conflicts of interest that often arise in physician-industry relationships must be recognized, and keenly managed in order to eliminate the risk and maximize the benefit to the patient. Ethical management of conflicts must include disclosure. To preserve patient autonomy, management should also include a discussion of the quality of the medical evidence on which treatment recommendations are made. Guidelines from industry and medical professional organizations, including the "Standards of Professionalism" currently under development by the American Academy of Orthopedic Surgery, are also expected to aid in the ethical establishment and management of conflicts of interest. Careful consideration of conflicts of interest in physician-industry relationships has provided an opportunity to review our goals as physicians in society, and to continue collaborative advancement of our field for the benefit of our patients.

  13. ‘Transport to Where?’: Reflections on the problem of value and time à propos an awkward practice in medical research

    PubMed Central

    Geissler, P. Wenzel

    2011-01-01

    Based upon Kenyan ethnography, this article examines the gap between the bioethics aversion to value transfers in clinical trials, and research participants’ and researchers’ expectations of these. This article focuses upon so-called ‘transport reimbursement’ (TR): monetary payments to participants that are framed as mere refund of transport expenses, but which are of considerable value to recipients. The interest in this case lies not so much in the unsurprising gap between regulatory norms and poor study subjects’ lives, but in the way in which this discrepancy between bioethical discourse and materialities of survival is silenced. In spite of the general awareness that TR indeed is about the material value of research, about value calculation, and expectations of return, it is not publicly discussed as such – unless ironically, in jest, or in private. This double-blindness around ‘reimbursement’ has provoked discussions among ethicists and anthropologists, some of which propose that the work that generates scientific value should be recognised as labour and participants, accordingly, paid. Here, this paper argues that such a re-vision of trial participation as work rather than as a gift for the public good, risks abrogating the possibility of ‘the public’ that is not only a precondition of public medical science, but also its potential product. The supposedly radical solution of tearing away the veils of misrecognition that ‘free’ gifting ideology lays upon the realities of free labour, though analytically plausible, fails to recognise the utopian openings within clinical trial transactions that point beyond the present – towards larger forms of social association, and towards future alignments of scientific possibilities and human lives. PMID:23914253

  14. Health promotion: an ethical analysis.

    PubMed

    Carter, Stacy M

    2014-04-01

    Thinking and practising ethically requires reasoning systematically about the right thing to do. Health promotion ethics - a form of applied ethics - includes analysis of health promotion practice and how this can be ethically justified. Existing frameworks can assist in such evaluation. These acknowledge the moral value of delivering benefits. But benefits need to be weighed against burdens, harms or wrongs, and these should be minimised: they include invading privacy, breaking confidentiality, restraining liberty, undermining self-determination or people's own values, or perpetuating injustice. Thinking about the ethics of health promotion also means recognising health promotion as a normative ideal: a vision of the good society. This ideal society values health, sees citizens as active and includes them in decisions that affect them, and makes the state responsible for providing all of its citizens, no matter how advantaged or disadvantaged, with the conditions and resources they need to be healthy. Ethicists writing about health promotion have focused on this relationship between the citizen and the state. Comparing existing frameworks, theories and the expressed values of practitioners themselves, we can see common patterns. All oppose pursuing an instrumental, individualistic, health-at-all-costs vision of health promotion. And all defend the moral significance of just processes: those that engage with citizens in a transparent, inclusive and open way. In recent years, some Australian governments have sought to delegitimise health promotion, defining it as extraneous to the role of the state. Good evidence is not enough to counter this trend, because it is founded in competing visions of a good society. For this reason, the most pressing agenda for health promotion ethics is to engage with communities, in a procedurally just way, about the role and responsibilities of the citizen and the state in promoting and maintaining good health.

  15. Medical ethics and ethical dilemmas.

    PubMed

    Iyalomhe, G B S

    2009-01-01

    Ethical problems routinely arise in the hospital and outpatient practice settings and times of dilemma do occur such that practitioners and patients are at cross-roads where choice and decision making become difficult in terms of ethics. This paper attempts a synopsis of the basic principles of medical ethics, identifies some ethical dilemmas that doctors often encounter and discusses some strategies to address them as well as emphasizes the need for enhanced ethics education both for physicians and patients particularly in Nigeria. Literature and computer programmes (Medline and PsychoInfo databases) were searched for relevant information. The search showed that the fundamental principles suggested by ethicists to assist doctors to evaluate the ethics of a situation while making a decision include respect for autonomy, beneficence, non-maleficence and justice. Although the above principles do not give answers as to how to handle a particular situation, they serve as a guide to doctors on what principles ought to apply to actual circumstances. The principles sometimes conflict with each other leading to ethical dilemmas when applied to issues such as abortion, contraception, euthanasia, professional misconduct, confidentiality truth telling, professional relationship with relatives, religion, traditional medicine and business concerns. Resolution of dilemmas demand the best of the doctor's knowledge of relevant laws and ethics, his training and experience, his religious conviction and moral principles as well as his readiness to benefit from ethics consultation and the advice of his colleagues. Ethics education should begin from the impressionable age in homes, continued in the medical schools and after graduation to ensure that doctors develop good ethical practices and acquire the ability to effectively handle ethical dilemmas. Also, education of patients and sanction of unethical behaviour will reduce ethical dilemmas.

  16. Ethical and legal constraints to children's participation in research in Zimbabwe: experiences from the multicenter pediatric HIV ARROW trial.

    PubMed

    Bwakura-Dangarembizi, Mutsa; Musesengwa, Rosemary; Nathoo, Kusum J; Takaidza, Patrick; Mhute, Tawanda; Vhembo, Tichaona

    2012-07-20

    Clinical trials involving children previously considered unethical are now considered essential because of the inherent physiological differences between children and adults. An integral part of research ethics is the informed consent, which for children is obtained by proxy from a consenting parent or guardian. The informed consent process is governed by international ethical codes that are interpreted in accordance with local laws and procedures raising the importance of contextualizing their implementation. In Zimbabwe the parental informed consent document for children participating in clinical research is modeled after Western laws of ethics and requires that the parent or legally authorized representative provide consent on behalf of a minor. This article highlights the experiences and lessons learnt by Zimbabwean researchers in obtaining informed consent from guardians of orphaned children participating in a collaborative HIV clinical trial involving the Medical Research Council, United Kingdom and four centers, three of which are in Uganda. Researchers were faced with a situation where caregivers of orphaned children were not permitted to provide informed consent for trial participation. The situation contrasted with general clinical practice where consent for procedures on orphans is obtained from their caregivers who are not legal guardians. The challenges faced in obtaining informed consent for orphans in this clinical trial underscores the need for the Zimbabwe ethics committee to develop an ethical and legal framework for pediatric research that is based on international guidelines while taking into account the cultural context. The Medical Research Council of Zimbabwe has since started the process that is expected to involve critical stakeholders namely the community including children, ethicists, the legal fraternity and researchers.

  17. Improvement in kidney transplantation in the Balkans after the Istanbul Declaration: where do we stand today?

    PubMed

    Spasovski, Goce; Busic, Mirela; Delmonico, Francis

    2016-02-01

    Due to the limited access to kidney transplantation (KTx) in developing countries, desperate patients have engaged in the purchase and sale of kidneys. In 2004, the World Health Assembly urged member states to protect the poor and vulnerable from being exploited through practices of illegal organ trafficking that had become widespread throughout the world. In 2008, the international transplant community convened a summit of transplant professionals, legal experts and ethicists to combat organ trafficking, transplant tourism and transplant commercialism that resulted in the Declaration of Istanbul (DOI). The South-Eastern Europe Health Network (SEEHN) represents a nine country multigovernmental collaboration on health systems. The Regional Health Development Centre on Organ Donation and Transplant Medicine (RHDC) was established in 2011 in Croatia to facilitate cooperation among south-eastern European countries to improve organ transplantation within the Balkan region. Since 2011, a collaboration between the RHDC, the Custodian Group of the DOI (DICG) and SEEHN professionals has enhanced strategic planning and definition of country-specific action plan priorities on organ donation and transplantation. Data of kidney transplantation provided in this report show a significant increase in transplantation activities in a 4-year period in Macedonia, Moldova, Bosnia and Hercegovina, Romania and Montenegro. The success of the donation and transplantation programmes was influenced by the engagement of key professionals and the establishment of organizational infrastructure with the implementation of an appropriate funding model. In conclusion, the DOI has provided an ethical framework for engagement of health professionals from south-eastern European countries. The newly established SEEHN RHDC as a technical coordinating body greatly contributed in building institutional capacity and strengthening regional collaboration between health authorities and professionals within these countries for improvement of transplant activities in the Balkans.

  18. Non-medical sex-selective abortion in China: ethical and public policy issues in the context of 40 million missing females.

    PubMed

    Nie, Jing-Bao

    2011-01-01

    The rapidly growing imbalance of the sex ratio at birth (SRB) in China since the late 1980s demonstrates that, despite an extensive official prohibition, sex-selective abortion has been widely practised there in the past two or three decades. Given the reality of 30-40 million missing females, China has a more challenging set of ethical and social policy issues to be addressed regarding sex-selective abortion than is the case in Western and many other countries. This article is based on a search and review of Chinese and English-language literature, including several very recent books in Chinese on the imbalance of the sex ratio at birth in China. It also draws on first-hand information gathered from the author's extensive fieldwork on Chinese views and experiences of abortion. The current female deficit is a real and serious problem in China-not a 'false alarm' as earlier alleged. It is a direct consequence of the widespread practice of sex-selective abortion and is chiefly caused by the strong socio-cultural preference for sons in China. Chinese academics-demographers and medical ethicists-in general agree with the official position that sex-selective abortion is morally wrong and should be legally prohibited. Some critical voices, mainly in the English-language literature, have asked whether coercive state intervention in this area is ethically justifiable. Another controversial question is whether and to what degree China's ambitious and rigorous population control programme, widely known as the 'one child' policy, is a contributing factor to the phenomenon of millions of missing females. Much further research on the ethical and social policy issues surrounding sex-selective abortion in the Chinese context needs to be done. Systematic quantitative and in-depth qualitative sociological investigations into Chinese people's attitudes toward the subject, and the role of medical professionals, are long overdue.

  19. Apology in cases of medical error disclosure: Thoughts based on a preliminary study

    PubMed Central

    Dahan, Sonia; Ducard, Dominique

    2017-01-01

    Background Disclosing medical errors is considered necessary by patients, ethicists, and health care professionals. Literature insists on the framing of this disclosure and describes the apology as appropriate and necessary. However, this policy seems difficult to put into practice. Few works have explored the function and meaning of the apology. Objective The aim of this study was to explore the role ascribed to apology in communication between healthcare professionals and patients when disclosing a medical error, and to discuss these findings using a linguistic and philosophical perspective. Methods Qualitative exploratory study, based on face-to-face semi-structured interviews, with seven physicians in a neonatal unit in France. Discourse analysis. Results Four themes emerged. Difference between apology in everyday life and in the medical encounter; place of the apology in the process of disclosure together with explanations, regrets, empathy and ways to avoid repeating the error; effects of the apology were to allow the patient-physician relationship undermined by the error, to be maintained, responsibility to be accepted, the first steps towards forgiveness to be taken, and a less hierarchical doctor-patient relationship to be created; ways of expressing apology (“I am sorry”) reflected regrets and empathy more than an explicit apology. Conclusion This study highlights how the act of apology can be seen as a “language act” as described by philosophers Austin and Searle, and how it functions as a technique for making amends following a wrongdoing and as an action undertaken in order that neither party should lose face, thus echoing the sociologist Goffmann’s interaction theory. This interpretation also accords with the views of Lazare, for whom the function of apology is a restoration of dignity after the humiliation of the error. This approach to the apology illustrates how meaning and impact of real-life language acts can be clarified by philosophical and sociological ideas. PMID:28759586

  20. United Nations and human cloning: a slender and fortunate defence for biomedical research.

    PubMed

    Edwards, R G

    2003-12-01

    Numerous biomedical scientists have contributed to the wide knowledge on the growth of preimplantation human embryos in vitro, now improving every aspect of the form of clinical care. These data were gained ethically in many countries, to open new vistas including the alleviation of infertility, preimplantation genetic diagnosis and stem cells, combined with some recent reports on human reproductive cloning. After detailed consultations with scientists, clinicians, ethicists and lawyers, many governments passed legislation permitting research under their own particular socially-defined conditions. Virtually all of them rejected reproductive cloning; a few have accepted therapeutic cloning. These legislatures saluted the many biomedical scientists striving to improve IVF and its derivatives, recognizing their immense medical potential. A motion recently placed before the United Nations then recommended a worldwide ban on all forms of human cloning. Proponents included the Vatican and many Roman Catholic countries, the USA and others. Opponents included Belgium, China, Japan, Brazil, UK, Germany and France. Mediation was achieved by Iran and other Muslim nations, and led to a motion passed by single vote for a two-year delay. This may be the first-ever proposal to ban worldwide a particular form of research. It sounds the alarm bells for further research. It raises questions about the UN being an appropriate forum for ethical decisions affecting the entire world and its future medicine. Large blocs of nations committed to particular religions and outlooks confronted each other, a situation in total contrast to the detailed and widespread consultations made by individual governments when deciding their own individual ethics. This event was clearly a narrow escape for free research as defined by each country's own jurisprudence. It also places research on human embryology and reproductive biomedicine into a more critical situation than before. Current liberalism in studies on assisted conception, clearly threatened by powerful adversaries, will have to be fortified to maintain the current impetus into newer forms of clinical care.

  1. Human-animal chimeras for vaccine development: an endangered species or opportunity for the developing world?

    PubMed Central

    2010-01-01

    Background In recent years, the field of vaccines for diseases such as Human Immunodeficiency Virus (HIV) which take a heavy toll in developing countries has faced major failures. This has led to a call for more basic science research, and development as well as evaluation of new vaccine candidates. Human-animal chimeras, developed with a 'humanized' immune system could be useful to study infectious diseases, including many neglected diseases. These would also serve as an important tool for the efficient testing of new vaccine candidates to streamline promising candidates for further trials in humans. However, developing human-animal chimeras has proved to be controversial. Discussion Development of human-animal chimeras for vaccine development has been slowed down because of opposition by some philosophers, ethicists and policy makers in the west-they question the moral status of such animals, and also express discomfort about transgression of species barriers. Such opposition often uses a contemporary western world view as a reference point. Human-animal chimeras are often being created for diseases which cause significantly higher morbidity and mortality in the developing world as compared to the developed world. We argue in our commentary that given this high disease burden, we should look at socio-cultural perspectives on human-animal chimera like beings in the developing world. On examination, it's clear that such beings have been part of mythology and cultural descriptions in many countries in the developing world. Summary To ensure that important research on diseases afflicting millions like malaria, HIV, Hepatitis-C and dengue continues to progress, we recommend supporting human-animal chimera research for vaccine development in developing countries (especially China and India which have growing technical expertise in the area). The negative perceptions in some parts of the west about human-animal chimeras can be used as an opportunity for nurturing important vaccine development research in the developing world. PMID:20482820

  2. Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU.

    PubMed

    Wocial, Lucia; Ackerman, Veda; Leland, Brian; Benneyworth, Brian; Patel, Vinit; Tong, Yan; Nitu, Mara

    2017-03-01

    This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.

  3. Apology in cases of medical error disclosure: Thoughts based on a preliminary study.

    PubMed

    Dahan, Sonia; Ducard, Dominique; Caeymaex, Laurence

    2017-01-01

    Disclosing medical errors is considered necessary by patients, ethicists, and health care professionals. Literature insists on the framing of this disclosure and describes the apology as appropriate and necessary. However, this policy seems difficult to put into practice. Few works have explored the function and meaning of the apology. The aim of this study was to explore the role ascribed to apology in communication between healthcare professionals and patients when disclosing a medical error, and to discuss these findings using a linguistic and philosophical perspective. Qualitative exploratory study, based on face-to-face semi-structured interviews, with seven physicians in a neonatal unit in France. Discourse analysis. Four themes emerged. Difference between apology in everyday life and in the medical encounter; place of the apology in the process of disclosure together with explanations, regrets, empathy and ways to avoid repeating the error; effects of the apology were to allow the patient-physician relationship undermined by the error, to be maintained, responsibility to be accepted, the first steps towards forgiveness to be taken, and a less hierarchical doctor-patient relationship to be created; ways of expressing apology ("I am sorry") reflected regrets and empathy more than an explicit apology. This study highlights how the act of apology can be seen as a "language act" as described by philosophers Austin and Searle, and how it functions as a technique for making amends following a wrongdoing and as an action undertaken in order that neither party should lose face, thus echoing the sociologist Goffmann's interaction theory. This interpretation also accords with the views of Lazare, for whom the function of apology is a restoration of dignity after the humiliation of the error. This approach to the apology illustrates how meaning and impact of real-life language acts can be clarified by philosophical and sociological ideas.

  4. Rewards and challenges of providing HIV testing and counselling services: health worker perspectives from Burkina Faso, Kenya and Uganda.

    PubMed

    Bott, Sarah; Neuman, Melissa; Helleringer, Stephane; Desclaux, Alice; Asmar, Khalil El; Obermeyer, Carla Makhlouf

    2015-10-01

    The rapid scale-up of human immunodeficiency virus (HIV) testing, counselling and treatment throughout sub-Saharan Africa has raised questions about how to protect patients' rights to consent, confidentiality, counselling and care in resource-constrained settings. The Multi-country African Testing and Counselling for HIV (MATCH) study investigated client and provider experiences with different modes of testing in sub-Saharan Africa. One component of that study was a survey of 275 HIV service providers in Burkina Faso, Kenya and Uganda that gathered quantifiable indicators and qualitative descriptions using a standardized instrument. This article presents provider perspectives on the challenges of obtaining consent, protecting confidentiality, providing counselling and helping clients manage disclosure. It also explores health workers' fear of infection within the workplace and their reports on discrimination against HIV clients within health facilities. HIV care providers in Burkina Faso, Kenya and Uganda experienced substantial rewards from their work, including satisfaction from saving lives and gaining professional skills. They also faced serious resource constraints, including staff shortages, high workloads, lack of supplies and inadequate infrastructure, and they expressed concerns about accidental exposure. Health workers described heavy emotional demands from observing clients suffer emotional, social and health consequences of being diagnosed with HIV, and also from difficult ethical dilemmas related to clients who do not disclose their HIV status to those around them, including partners. These findings suggest that providers of HIV testing and counselling need more resources and support, including better protections against HIV exposure in the workplace. The findings also suggest that health facilities could improve care by increasing attention to consent, privacy and confidentiality and that health policy makers and ethicists need to address some unresolved ethical dilemmas related to confidentiality and non-disclosure, and translate those discussions into better guidance for health workers. Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine © The Author 2014; all rights reserved.

  5. [Assessment of the transplantation scandal by the media : scientific discourse analysis of selected German newspapers].

    PubMed

    Hoisl, A; Barbey, R; Graf, B M; Briegel, J; Bein, T

    2015-01-01

    The press is an important medium and plays a significant role as an information source for people. Moreover, the daily press transmits opinion-forming contents. During the German "transplantation scandal" various articles were published in the German press focusing on organ donation, transplantation, allocation of organs and brain death determination. Selected important newspaper articles were analyzed using a scientific text analysis as it was assumed that the publications might have had an important influence on attitudes or mistrust of transplantation medicine. A total of 216 articles from Süddeutsche Zeitung, Die Welt, Frankfurter Allgemeine Zeitung and Die Zeit published between summer 2012 and early 2013, which focused on the transplantation scandal were analyzed using a modern form of scientific text analysis. From these articles 12 categories of contents were identified which were analyzed quantitatively and qualitatively. Most articles were published between June and August 2012 when the accusations of organ allocation manipulation were made public. A second wave was found in the early months of 2013, when the court proceedings against the predominantly blamed physician began. Most of the categories (63.8 %) transmitted a negative evaluative opinion (i.e. loss of confidence, enrichment of the persons involved, fraud, misconduct, rejection of brain death and disturbing the peace of the dead) leading to mistrust of transplantation per se, while the minority (36.2 %) were categorized as endeavoring to convey objective information, focus on ethical responsibility for organ donation or the problems of organ shortage. Furthermore, a striking increase of articles doubting the concept of brain death was observed. German newspapers as important opinion-leading and opinion-forming media have a substantial impact in accomplishing the demands for objective and factual information of transplantation medicine. Physicians, ethicists, journalists and politicians are invoked to have a closer collaboration in the future.

  6. The need to balance merits and limitations from different disciplines when considering the stepped wedge cluster randomized trial design.

    PubMed

    de Hoop, Esther; van der Tweel, Ingeborg; van der Graaf, Rieke; Moons, Karel G M; van Delden, Johannes J M; Reitsma, Johannes B; Koffijberg, Hendrik

    2015-10-30

    Various papers have addressed pros and cons of the stepped wedge cluster randomized trial design (SWD). However, some issues have not or only limitedly been addressed. Our aim was to provide a comprehensive overview of all merits and limitations of the SWD to assist researchers, reviewers and medical ethics committees when deciding on the appropriateness of the SWD for a particular study. We performed an initial search to identify articles with a methodological focus on the SWD, and categorized and discussed all reported advantages and disadvantages of the SWD. Additional aspects were identified during multidisciplinary meetings in which ethicists, biostatisticians, clinical epidemiologists and health economists participated. All aspects of the SWD were compared to the parallel group cluster randomized design. We categorized the merits and limitations of the SWD to distinct phases in the design and conduct of such studies, highlighting that their impact may vary depending on the context of the study or that benefits may be offset by drawbacks across study phases. Furthermore, a real-life illustration is provided. New aspects are identified within all disciplines. Examples of newly identified aspects of an SWD are: the possibility to measure a treatment effect in each cluster to examine the (in)consistency in effects across clusters, the detrimental effect of lower than expected inclusion rates, deviation from the ordinary informed consent process and the question whether studies using the SWD are likely to have sufficient social value. Discussions are provided on e.g. clinical equipoise, social value, health economical decision making, number of study arms, and interim analyses. Deciding on the use of the SWD involves aspects and considerations from different disciplines not all of which have been discussed before. Pros and cons of this design should be balanced in comparison to other feasible design options as to choose the optimal design for a particular intervention study.

  7. Rewards and challenges of providing HIV testing and counselling services: health worker perspectives from Burkina Faso, Kenya and Uganda

    PubMed Central

    Bott, Sarah; Neuman, Melissa; Helleringer, Stephane; Desclaux, Alice; Asmar, Khalil El; Obermeyer, Carla Makhlouf

    2015-01-01

    The rapid scale-up of human immunodeficiency virus (HIV) testing, counselling and treatment throughout sub-Saharan Africa has raised questions about how to protect patients’ rights to consent, confidentiality, counselling and care in resource-constrained settings. The Multi-country African Testing and Counselling for HIV (MATCH) study investigated client and provider experiences with different modes of testing in sub-Saharan Africa. One component of that study was a survey of 275 HIV service providers in Burkina Faso, Kenya and Uganda that gathered quantifiable indicators and qualitative descriptions using a standardized instrument. This article presents provider perspectives on the challenges of obtaining consent, protecting confidentiality, providing counselling and helping clients manage disclosure. It also explores health workers’ fear of infection within the workplace and their reports on discrimination against HIV clients within health facilities. HIV care providers in Burkina Faso, Kenya and Uganda experienced substantial rewards from their work, including satisfaction from saving lives and gaining professional skills. They also faced serious resource constraints, including staff shortages, high workloads, lack of supplies and inadequate infrastructure, and they expressed concerns about accidental exposure. Health workers described heavy emotional demands from observing clients suffer emotional, social and health consequences of being diagnosed with HIV, and also from difficult ethical dilemmas related to clients who do not disclose their HIV status to those around them, including partners. These findings suggest that providers of HIV testing and counselling need more resources and support, including better protections against HIV exposure in the workplace. The findings also suggest that health facilities could improve care by increasing attention to consent, privacy and confidentiality and that health policy makers and ethicists need to address some unresolved ethical dilemmas related to confidentiality and non-disclosure, and translate those discussions into better guidance for health workers. PMID:25237134

  8. Ethics-sensitivity of the Ghana national integrated strategic response plan for pandemic influenza.

    PubMed

    Laar, Amos; DeBruin, Debra

    2015-05-07

    Many commentators call for a more ethical approach to planning for influenza pandemics. In the developed world, some pandemic preparedness plans have already been examined from an ethical viewpoint. This paper assesses the attention given to ethics issues by the Ghana National Integrated Strategic Plan for Pandemic Influenza (NISPPI). We critically analyzed the Ghana NISPPI's sensitivity to ethics issues to determine how well it reflects ethical commitments and principles identified in our review of global pandemic preparedness literature, existing pandemic plans, and relevant ethics frameworks. This paper reveals that important ethical issues have not been addressed in the Ghana NISPPI. Several important ethical issues are unanticipated, unacknowledged, and unplanned for. These include guidelines on allocation of scarce resources, the duties of healthcare workers, ethics-sensitive operational guidelines/protocols, and compensation programs. The NISPPI also pays scant attention to use of vaccines and antivirals, border issues and cooperation with neighboring countries, justification for delineated actions, and outbreak simulations. Feedback and communication plans are nebulous, while leadership, coordination, and budgeting are quite detailed. With respect to presentation, the NISPPI's text is organized around five thematic areas. While each area implicates ethical issues, NISPPI treatment of these areas consistently fails to address them. Our analysis reveals a lack of consideration of ethics by the NISPPI. We contend that, while the plan's content and fundamental assumptions provide support for implementation of the delineated public health actions, its consideration of ethical issues is poor. Deficiencies include a failure to incorporate guidelines that ensure fair distribution of scarce resources and a lack of justification for delineated procedures. Until these deficiencies are recognized and addressed, Ghana runs the risk of rolling out unjust and ethically indefensible actions with real negative effects in the event of a pandemic. Soliciting inputs from the public and consultation with ethicists during the next revision of the NISPPI will be useful in addressing these issues.

  9. The Rise of Hospitalists: An Opportunity for Clinical Ethics.

    PubMed

    McCarthy, Matthew W; Real de Asua, Diego; Fins, Joseph J

    2017-01-01

    Translating ethical theories into clinical practice presents a perennial challenge to educators. While many suggestions have been put forth to bridge the theory-practice gap, none have sufficiently remedied the problem. We believe the ascendance of hospital medicine, as a dominant new force in medical education and patient care, presents a unique opportunity that could redefine the way clinical ethics is taught. The field of hospital medicine in the United States is comprised of more than 50,000 hospitalists-specialists in inpatient medicine-representing the fastest growing subspecialty in the history of medicine, and its members have emerged as a dominant new force around which medical education and patient care pivot. This evolution in medical education presents a unique opportunity for the clinical ethics community. Through their proximity to patients and trainees, hospitalists have the potential to teach medical ethics in real time on the wards, but most hospitalists have not received formal training in clinical ethics. We believe it is time to strengthen the ties between hospital medicine and medical ethics, and in this article we outline how clinical ethicists might collaborate with hospitalists to identify routine issues that do not rise to the level of an "ethics consult," but nonetheless require an intellectual grounding in normative reasoning. We use a clinical vignette to explore how this approach might enhance and broaden the scope of medical education that occurs in the inpatient setting: A patient with an intra-abdominal abscess is admitted to the academic hospitalist teaching service for drainage of the fluid, hemodynamic support, and antimicrobial therapy. During the initial encounter with the hospitalist and his team of medical students and residents, the patient reports night sweats and asks if this symptom could be due to the abscess. How should the hospitalist approach this question? Copyright 2017 The Journal of Clinical Ethics. All rights reserved.

  10. The main indicators for Iranian hospital ethical accreditation

    PubMed Central

    ENJOO, SEYED ALI; AMINI, MITRA; TABEI, SEYED ZIAADIN; MAHBUDI, ALI; KAVOSI, ZAHRA; SABER, MAHBOOBEH

    2015-01-01

    Introduction The application of organizational ethics in hospitals is one of the novel ways to improve medical ethics. Nowadays achieving efficient and sufficient ethical hospital indicators seems to be inevitable. In this connection, the present study aims to determine the best indicators in hospital accreditation. Methods 69 indicators in 11 fields to evaluate hospital ethics were achieved through a five-step qualitative and quantitative study including literature review, expert focus group, Likert scale survey, 3 rounded Delphi, and content validity measurement. Expert focus group meeting was conducted, employing Nominal Group Technique (NGT). After running NGT, a three rounded Delphi and parallel to Delphi and a Likert scale survey were performed to obtain objective indicators for each domain. The experts were all healthcare professionals who were also medical ethics researchers, teachers, or PhD students. Content validity measurements were computed, using the viewpoints of two different expert groups, some ethicists, and some health care professionals (n=46). Results After conducting NGT, Delphi, Likert survey, 11 main domains were listed including:  Informed consent, Medical confidentiality, Physician-patient economic relations, Ethics consultation policy in the hospital, Ethical charter of hospital, Breaking bad medical news protocol, Respect for the patients’ rights, Clinical ethics committee, Spiritual and palliative care unit programs in the hospitals, Healthcare professionals’ communication skills, and Equitable access to the healthcare. Also 71 objective indicators for these 11 domains were listed in 11 tables with 5 to 8 indicators per table. Content Validity Ratio (CVR) measurements were done and 69 indicators were highlighted. Conclusion The domains listed in this study seem to be the most important ones for evaluating hospital ethics programs and services. Healthcare organizations’ accreditation and ranking are crucial for the improvement of healthcare services. Ethics programs would also motivate hospitals to improve their services and move towards patients’ satisfaction. In this regard, more involvement of bioethicists can help healthcare organizations to develop ethics programs and ensure ethics-based practice in hospitals. PMID:26269789

  11. [Albert Schweitzer's MD thesis on Criticism of the medical pathographies on Jesus].

    PubMed

    Seidel, Michael

    2009-01-01

    The prominent philosopher, theologian, physician, musicologist and organ soloist Albert Schweitzer (14. 1. 1875-4. 9. 1965) submitted his MD thesis Kritik der von medizinischer Seite veröffentlichten Pathographien uber Jesus (Criticism of the medical pathographies on Jesus) in 1913. Very soon he published this work under the title Die psychiatrische Beurteilung Jesu. Darstellung und Kritik (The psychiatric evaluation of Jesus. Description and criticism) in order to reach a broader audience. Schweitzer's explicit motive for selecting this topic was to influence the theological debate by means of a M. D. thesis on psychiatric pathographies on Jesus. He was confronted with a lot of reproaches. These reproaches contended that his theological opinions had been supporting tendencies to describe Jesus as a mentally ill person or a religious fanatic. In addition, some authors of pathographies on Jesus (De Loosten, Binet-Sanglé, Hirsch, Rasmussen) characterized Jesus as mentally ill, suffering from paranoia. Schweitzer intended to reject the reproaches considering himself and the postulates of the authors of the pathographies. Schweitzer combined in a transdisciplinary way theological, psychiatric and psychopathological arguments. He did this in a very convincing way. Although Schweitzer did not deal with a central or explicit psychiatric question, he implicitly postulated transdisciplinary approaches for proper retrospective pathographies on historic persons. At the age of thirty, Schweitzer decided to finish his academic career and to begin studies in medicine as a preparation for work as a physician in Africa. This decision provoked much lack of understanding in his personal environment. Therefore it may be possible that a very personal motive contributed to the selection of the topic of the MD thesis. Among psychiatric authorities, Albert Schweitzer's interest in the criticisms of psychiatric pathographies and his transdisciplinary approach to this topic encountered rather criticism from a positivistic point of view than understanding. As a reaction to this, Schweitzer postulated some fundamental positions regarding the cultural or social responsibility of science and regarding the interdisciplinary cooperation within the universitas litterarum. These positions precede the way Albert Schweitzer is reconsidered as author in cultural studies and ethicist. The fact that this happened immediately before the beginning of the WWI may show his farsightedness.

  12. Ethical Challenges of Medicine and Health on the Internet: A Review

    PubMed Central

    2001-01-01

    Knowledge and capabilities, particularly of a new technology or in a new area of study, frequently develop faster than the guidelines and principles needed for practitioners to practice ethically in the new arena; this is particularly true in medicine. The blending of medicine and healthcare with e-commerce and the Internet raises many questions involving what sort of ethical conduct should be expected by practitioners and developers of the medical Internet. Some of the early pioneers in medical and healthcare Web sites pushed the ethical boundaries with questionable, even unethical, practices. Many involved with the medical Internet are now working to reestablish patient and consumer trust by establishing guidelines to determine how the fundamentals of the medical code of ethical conduct can best be adapted for the medical/healthcare Internet. Ultimately, all those involved in the creation, maintenance, and marketing of medical and healthcare Web sites should be required to adhere to a strict code of ethical conduct, one that has been fairly determined by an impartial international organization with reasonable power to regulate the code. This code could also serve as a desirable, recognizable label-of-distinction for ethical Web sites within the medical and healthcare Internet community. One challenge for those involved with the medical and healthcare Internet will be to determine what constitutes "Medical Internet Ethics" or "Healthcare Internet Ethics," since the definition of medical ethics can vary from country to country. Therefore, the emerging field of Medical/ Healthcare Internet Ethics will require careful thought and insights from an international collection of ethicists in many contributing areas. This paper is a review of the current status of the evolving field of Medical/Healthcare Internet Ethics, including proposed definitions and identification of many diverse areas that may ultimately contribute to this multidisciplinary field. The current role that medicine and health play in the growing area of Internet communication and commerce and many of the ethical challenges raised by the Internet for the medical community are explored and some possible ways to address these ethical challenges are postulated. PMID:11720965

  13. An explanation and analysis of how world religions formulate their ethical decisions on withdrawing treatment and determining death.

    PubMed

    Setta, Susan M; Shemie, Sam D

    2015-03-11

    This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer. Research took several forms beginning with a review of books and articles written by ethicists and observers of Bön, Buddhism, Christianity, Hinduism, Indigenous Traditions, Islam, Judaism, Shinto and Taoism. It then examined sources to which these authors referred in footnotes and bibliographies. In addition, material was gathered through searches of data bases in religious studies, general humanities, social sciences and medicine along with web-based key word searches for current policies in various traditions. Religious traditions provide their adherents with explanations for the meaning and purpose of life and include ethical analysis for the situations in which their followers find themselves. This paper aims to increase cultural competency in practitioners by demonstrating the reasoning process religions use to determine what they believe to be the correct decision in the face of death. Patterns emerge in the comparative study of religious perspectives on death. Western traditions show their rootedness in Judaism in their understanding of the human individual as a finite, singular creation. Although the many branches of Western religions do not agree on precisely how to determine death, they are all able to locate a moment of death in the body. In Eastern traditions personhood is not defined in physical terms. From prescribing the location of death, to resisting medical intervention and definitions of death, Eastern religions, in their many forms, incorporate the beliefs and practices that preceded them. Adding to the complexity for these traditions is the idea that death is a process that continues after the body has met most empirical criteria for determining death. For Hinduism and Buddhism, the cessation of heart, brain and lung function is the beginning of the process of dying--not the end.

  14. Ethical challenges of medicine and health on the Internet: a review.

    PubMed

    Dyer, K A

    2001-01-01

    Knowledge and capabilities, particularly of a new technology or in a new area of study, frequently develop faster than the guidelines and principles needed for practitioners to practice ethically in the new arena; this is particularly true in medicine. The blending of medicine and healthcare with e-commerce and the Internet raises many questions involving what sort of ethical conduct should be expected by practitioners and developers of the medical Internet. Some of the early pioneers in medical and healthcare Web sites pushed the ethical boundaries with questionable, even unethical, practices. Many involved with the medical Internet are now working to reestablish patient and consumer trust by establishing guidelines to determine how the fundamentals of the medical code of ethical conduct can best be adapted for the medical/healthcare Internet. Ultimately, all those involved in the creation, maintenance, and marketing of medical and healthcare Web sites should be required to adhere to a strict code of ethical conduct, one that has been fairly determined by an impartial international organization with reasonable power to regulate the code. This code could also serve as a desirable, recognizable label-of-distinction for ethical Web sites within the medical and healthcare Internet community. One challenge for those involved with the medical and healthcare Internet will be to determine what constitutes "Medical Internet Ethics" or "Healthcare Internet Ethics," since the definition of medical ethics can vary from country to country. Therefore, the emerging field of Medical/ Healthcare Internet Ethics will require careful thought and insights from an international collection of ethicists in many contributing areas. This paper is a review of the current status of the evolving field of Medical/Healthcare Internet Ethics, including proposed definitions and identification of many diverse areas that may ultimately contribute to this multidisciplinary field. The current role that medicine and health play in the growing area of Internet communication and commerce and many of the ethical challenges raised by the Internet for the medical community are explored and some possible ways to address these ethical challenges are postulated.

  15. Health Law as Social Justice.

    PubMed

    Wiley, Lindsay F

    2014-01-01

    Health law is in the midst of a dramatic transformation. From a relatively narrow discipline focused on regulating relationships among individual patients, health care providers, and third-party payers, it is expanding into a far broader field with a burgeoning commitment to access to health care and assurance of healthy living conditions as matters of social justice. Through a series of incremental reform efforts stretching back decades before the Affordable Care Act and encompassing public health law as well as the law of health care financing and delivery, reducing health disparities has become a central focus of American health law and policy. This Article labels, describes, and furthers a nascent "health justice" movement by examining what it means to view health law as an instrument of social justice. Drawing on the experiences of the reproductive justice, environmental justice, and food justice movements, and on the writings of political philosophers and ethicists on health justice, I propose that health justice offers an alternative to the market competition and patient rights paradigms that currently dominate health law scholarship, advocacy, and reform. I then examine the role of law in reducing health disparities through the health justice lens. I argue that the nascent health justice framework suggests three commitments for the use of law to reduce health disparities. First, to a broader inquiry that views access to health care as one among many social determinants of health deserving of public attention and resources. Second, to probing inquiry into the effects of class, racial, and other forms of social and cultural bias on the design and implementation of measures to reduce health disparities. And third, to collective action grounded in community engagement and participatory parity. In exploring these commitments, I highlight tensions within the social justice framework and between the social justice framework and the nascent health justice movement. These tensions illustrate, rather than undermine, the power of viewing health law as social justice. They raise important questions that should prompt more fruitful and rigorous thinking within health law activism and scholarship and with regard to the relationships between law and social justice more broadly.

  16. Smoking, educational status and health inequity in India.

    PubMed

    Gupta, Rajeev

    2006-07-01

    Health related behaviours, especially smoking and tobacco use, are major determinants of health and lead to health inequities. Smoking leads to acute respiratory diseases, tuberculosis and asthma in younger age groups and non communicable diseases such as chronic lung disease, cardiovascular diseases and cancer in middle and older age. We observed an inverse association of educational status with tobacco use (smoking and other forms) in western Indian State of Rajasthan. In successive cross-sectional epidemiological studies- the Jaipur Heart Watch (JHW)- in rural (JHWR; n=3148, men=1982), and urban subjects: JHW-1 (n=2212, men=1415), JHW-2 (n=1124, men=550) and JHW-3 (n=458, men=226), we evaluated various cardiovascular risk factors. The greatest tobacco consumption was observed among the illiterate and low educational status subjects (nil, 1-5, 6-10, >10 yr of formal education) as compared to more literate in men (JHW-R 60, 51, 46 and 36% respectively; JHW-1 44, 52, 30 and 18% JHW-2 54, 43, 29 and 24%; and JHW-3 50, 27, 25 and 25%) as well as women (Mantel Haenzel test, P for trend <0.05). In the illiterate subjects the odds ratios (OR) and 95 per cent confidence intervals (CI) for smoking or tobacco use as compared to the highest educational groups in rural (men OR 2.68, CI 2.02, 3.57; women OR 3.13, CI 1.22, 8.08) as well as larger urban studies- JHW-1 (men OR 2.47, CI 1.70, 3.60; women OR 13.78, CI 3.35, 56.75) and JHW-2 (men OR 3.81; CI 1.90, 7.66; women OR 13.73, CI 1.84, 102.45) were significantly greater (P<0.01). Smoking significantly correlated with prevalence of coronary heart disease and hypertension. Other recent Indian studies and national surveys report similar associations. Health ethicists argue that good education and health lead to true development in an underprivileged society. We propose that improving educational status, a major social determinant of health, can lead to appropriate health related behaviours and prevent the epidemics of non communicable diseases in developing countries.

  17. Why not integrate ethics in HTA: identification and assessment of the reasons.

    PubMed

    Hofmann, Bjørn

    2014-01-01

    From the conception of HTA in the 1970s it has been argued that addressing ethical issues is an element of HTA, and many methods for integrating ethics in HTA have become available. However, despite almost 40 years with repeated intentions, only few HTA reports include ethical analysis. Why is this so? How come, ethics is a constituent part of HTA, there are many methods available, but ethics is rarely part of practical HTA work? This is the key question of this article and several reasons why ethics is not a part of HTA are identified. A) Ethicists are professional strangers in HTA. B) A common agreed methodology for integrating ethics is lacking. Ethics methodology appears to be C) deficient, D) insufficient, or E) unsuitable. F) Integrating ethics in HTA is neither efficient nor needed for successful HTA. G) Most moral issues are general, and are not specific to a given technology. H) All relevant ethical issues can be handled within other frameworks, e.g., within economics. I) Ethics can undermine or burst the foundation of HTA. Hence, there are many reasons why ethics is not an integrated part of HTA so many years after identifying ethics as constitutive to HTA. These reasons may all explain why it is so, but on closer scrutiny, they do not work as compelling arguments for not addressing ethical issues in HTA. Hence, the identified reasons may work well as explanations, but not as justifications. In order to move on from a situation of failure we can: Exclude ethics from definitions of HTA, and as a consequence, establish a separate kind of evaluation (Health Technology Evaluation - HTE). Take the existing definition seriously and actually integrate ethics in the performance of HTA practice. Amend, expand or change HTA so that ethics is more genuinely incorporated. Which of these options to choose is open for discussion, but we need to move away from a situation where we have a definition of HTA which does not correspond with HTA practice.

  18. 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.

  19. Why not integrate ethics in HTA: identification and assessment of the reasons

    PubMed Central

    Hofmann, Bjørn

    2014-01-01

    From the conception of HTA in the 1970s it has been argued that addressing ethical issues is an element of HTA, and many methods for integrating ethics in HTA have become available. However, despite almost 40 years with repeated intentions, only few HTA reports include ethical analysis. Why is this so? How come, ethics is a constituent part of HTA, there are many methods available, but ethics is rarely part of practical HTA work? This is the key question of this article and several reasons why ethics is not a part of HTA are identified. A) Ethicists are professional strangers in HTA. B) A common agreed methodology for integrating ethics is lacking. Ethics methodology appears to be C) deficient, D) insufficient, or E) unsuitable. F) Integrating ethics in HTA is neither efficient nor needed for successful HTA. G) Most moral issues are general, and are not specific to a given technology. H) All relevant ethical issues can be handled within other frameworks, e.g., within economics. I) Ethics can undermine or burst the foundation of HTA. Hence, there are many reasons why ethics is not an integrated part of HTA so many years after identifying ethics as constitutive to HTA. These reasons may all explain why it is so, but on closer scrutiny, they do not work as compelling arguments for not addressing ethical issues in HTA. Hence, the identified reasons may work well as explanations, but not as justifications. In order to move on from a situation of failure we can: Exclude ethics from definitions of HTA, and as a consequence, establish a separate kind of evaluation (Health Technology Evaluation – HTE). Take the existing definition seriously and actually integrate ethics in the performance of HTA practice. Amend, expand or change HTA so that ethics is more genuinely incorporated. Which of these options to choose is open for discussion, but we need to move away from a situation where we have a definition of HTA which does not correspond with HTA practice. PMID:25493101

  20. Refining animal models in fracture research: seeking consensus in optimising both animal welfare and scientific validity for appropriate biomedical use.

    PubMed

    Auer, Jorg A; Goodship, Allen; Arnoczky, Steven; Pearce, Simon; Price, Jill; Claes, Lutz; von Rechenberg, Brigitte; Hofmann-Amtenbrinck, Margarethe; Schneider, Erich; Müller-Terpitz, R; Thiele, F; Rippe, Klaus-Peter; Grainger, David W

    2007-08-01

    In an attempt to establish some consensus on the proper use and design of experimental animal models in musculoskeletal research, AOVET (the veterinary specialty group of the AO Foundation) in concert with the AO Research Institute (ARI), and the European Academy for the Study of Scientific and Technological Advance, convened a group of musculoskeletal researchers, veterinarians, legal experts, and ethicists to discuss, in a frank and open forum, the use of animals in musculoskeletal research. The group narrowed the field to fracture research. The consensus opinion resulting from this workshop can be summarized as follows: Anaesthesia and pain management protocols for research animals should follow standard protocols applied in clinical work for the species involved. This will improve morbidity and mortality outcomes. A database should be established to facilitate selection of anaesthesia and pain management protocols for specific experimental surgical procedures and adopted as an International Standard (IS) according to animal species selected. A list of 10 golden rules and requirements for conduction of animal experiments in musculoskeletal research was drawn up comprising 1) Intelligent study designs to receive appropriate answers; 2) Minimal complication rates (5 to max. 10%); 3) Defined end-points for both welfare and scientific outputs analogous to quality assessment (QA) audit of protocols in GLP studies; 4) Sufficient details for materials and methods applied; 5) Potentially confounding variables (genetic background, seasonal, hormonal, size, histological, and biomechanical differences); 6) Post-operative management with emphasis on analgesia and follow-up examinations; 7) Study protocols to satisfy criteria established for a "justified animal study"; 8) Surgical expertise to conduct surgery on animals; 9) Pilot studies as a critical part of model validation and powering of the definitive study design; 10) Criteria for funding agencies to include requirements related to animal experiments as part of the overall scientific proposal review protocols. Such agencies are also encouraged to seriously consider and adopt the recommendations described here when awarding funds for specific projects. Specific new requirements and mandates related both to improving the welfare and scientific rigour of animal-based research models are urgently needed as part of international harmonization of standards.

  1. Key Ethical Issues Discussed at CDC-Sponsored International, Regional Meetings to Explore Cultural Perspectives and Contexts on Pandemic Influenza Preparedness and Response

    PubMed Central

    Lor, Aun; Thomas, James C.; Barrett, Drue H.; Ortmann, Leonard W.; Herrera Guibert, Dionisio J.

    2016-01-01

    Background: Recognizing the importance of having a broad exploration of how cultural perspectives may shape thinking about ethical considerations, the Centers for Disease Control and Prevention (CDC) funded four regional meetings in Africa, Asia, Latin America, and the Eastern Mediterranean to explore these perspectives relevant to pandemic influenza preparedness and response. The meetings were attended by 168 health professionals, scientists, academics, ethicists, religious leaders, and other community members representing 40 countries in these regions. Methods: We reviewed the meeting reports, notes and stories and mapped outcomes to the key ethical challenges for pandemic influenza response described in the World Health Organization’s (WHO’s) guidance, Ethical Considerations in Developing a Public Health Response to Pandemic Influenza: transparency and public engagement, allocation of resources, social distancing, obligations to and of healthcare workers, and international collaboration. Results: The important role of transparency and public engagement were widely accepted among participants. However, there was general agreement that no "one size fits all" approach to allocating resources can address the variety of economic, cultural and other contextual factors that must be taken into account. The importance of social distancing as a tool to limit disease transmission was also recognized, but the difficulties associated with this measure were acknowledged. There was agreement that healthcare workers often have competing obligations and that government has a responsibility to assist healthcare workers in doing their job by providing appropriate training and equipment. Finally, there was agreement about the importance of international collaboration for combating global health threats. Conclusion: Although some cultural differences in the values that frame pandemic preparedness and response efforts were observed, participants generally agreed on the key ethical principles discussed in the WHO’s guidance. Most significantly the input gathered from these regional meetings pointed to the important role that procedural ethics can play in bringing people and countries together to respond to the shared health threat posed by a pandemic influenza despite the existence of cultural differences. PMID:27801360

  2. Key Ethical Issues Discussed at CDC-Sponsored International, Regional Meetings to Explore Cultural Perspectives and Contexts on Pandemic Influenza Preparedness and Response.

    PubMed

    Lor, Aun; Thomas, James C; Barrett, Drue H; Ortmann, Leonard W; Herrera Guibert, Dionisio J

    2016-05-17

    Recognizing the importance of having a broad exploration of how cultural perspectives may shape thinking about ethical considerations, the Centers for Disease Control and Prevention (CDC) funded four regional meetings in Africa, Asia, Latin America, and the Eastern Mediterranean to explore these perspectives relevant to pandemic influenza preparedness and response. The meetings were attended by 168 health professionals, scientists, academics, ethicists, religious leaders, and other community members representing 40 countries in these regions. We reviewed the meeting reports, notes and stories and mapped outcomes to the key ethical challenges for pandemic influenza response described in the World Health Organization's (WHO's) guidance, Ethical Considerations in Developing a Public Health Response to Pandemic Influenza: transparency and public engagement, allocation of resources, social distancing, obligations to and of healthcare workers, and international collaboration. The important role of transparency and public engagement were widely accepted among participants. However, there was general agreement that no "one size fits all" approach to allocating resources can address the variety of economic, cultural and other contextual factors that must be taken into account. The importance of social distancing as a tool to limit disease transmission was also recognized, but the difficulties associated with this measure were acknowledged. There was agreement that healthcare workers often have competing obligations and that government has a responsibility to assist healthcare workers in doing their job by providing appropriate training and equipment. Finally, there was agreement about the importance of international collaboration for combating global health threats. Although some cultural differences in the values that frame pandemic preparedness and response efforts were observed, participants generally agreed on the key ethical principles discussed in the WHO's guidance. Most significantly the input gathered from these regional meetings pointed to the important role that procedural ethics can play in bringing people and countries together to respond to the shared health threat posed by a pandemic influenza despite the existence of cultural differences. © 2016 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

  3. Assessing children’s competence to consent in research by a standardized tool: a validity study

    PubMed Central

    2012-01-01

    Background Currently over 50% of drugs prescribed to children have not been evaluated properly for use in their age group. One key reason why children have been excluded from clinical trials is that they are not considered able to exercise meaningful autonomy over the decision to participate. Dutch law states that competence to consent can be presumed present at the age of 12 and above; however, in pediatric practice children’s competence is not that clearly presented and the transition from assent to active consent is gradual. A gold standard for competence assessment in children does not exist. In this article we describe a study protocol on the development of a standardized tool for assessing competence to consent in research in children and adolescents. Methods/design In this study we modified the MacCAT-CR, the best evaluated competence assessment tool for adults, for use in children and adolescents. We will administer the tool prospectively to a cohort of pediatric patients from 6 to18 years during the selection stages of ongoing clinical trials. The outcomes of the MacCAT-CR interviews will be compared to a reference standard, established by the judgments of clinical investigators, and an expert panel consisting of child psychiatrists, child psychologists and medical ethicists. The reliability, criterion-related validity and reproducibility of the tool will be determined. As MacCAT-CR is a multi-item scale consisting of 13 items, power was justified at 130–190 subjects, providing a minimum of 10–15 observations per item. MacCAT-CR outcomes will be correlated with age, life experience, IQ, ethnicity, socio-economic status and competence judgment of the parent(s). It is anticipated that 160 participants will be recruited over 2 years to complete enrollment. Discussion A validity study on an assessment tool of competence to consent is strongly needed in research practice, particularly in the child and adolescent population. In this study we will establish a reference standard of children’s competence to consent, combined with validation of an assessment instrument. Results can facilitate responsible involvement of children in clinical trials by further development of guidelines, health-care policies and legal policies. PMID:23009102

  4. Readiness of ethics review systems for a changing public health landscape in the WHO African Region.

    PubMed

    Motari, Marion; Ota, Martin Okechukwu; Kirigia, Joses Muthuri

    2015-12-02

    The increasing emphasis on research, development and innovation for health in providing solutions to the high burden of diseases in the African Region has warranted a proliferation of studies including clinical trials. This changing public health landscape requires that countries develop adequate ethics review capacities to protect and minimize risks to study participants. Therefore, this study assessed the readiness of national ethics committees to respond to challenges posed by a globalized biomedical research system which is constantly challenged by new public health threats, rapid scientific and technological advancements affecting biomedical research and development, delivery and manufacture of vaccines and therapies, and health technology transfer. This is a descriptive study, which used a questionnaire structured to elicit information on the existence of relevant national legal frameworks, mechanisms for ethical review; as well as capacity requirements for national ethics committees. The questionnaire was available in English and French and was sent to 41 of the then 46 Member States of the WHO African Region, excluding the five Lusophone Member States. Information was gathered from senior officials in ministries of health, who by virtue of their offices were considered to have expert knowledge of research ethics review systems in their respective countries. Thirty three of the 41 countries (80.5 %) responded. Thirty (90.9 %) of respondent countries had a national ethics review committee (NEC); 79 % of which were established by law. Twenty-five (83.3 %) NECs had secretarial and administrative support. Over 50 % of countries with NECs indicated a need for capacity strengthening through periodic training on international guidelines for health research (including clinical trials) ethics; and allocation of funds for administrative and secretariat support. Despite the existing training initiatives, the Region still experiences a shortage of professionals trained in health research ethics/ethicists. Committees continue to face various capacity needs especially for evaluating clinical trials, for monitoring ongoing research, database management and for accrediting institutional ethics committees. Given the growing number of clinical trials involving human participants in the African Region, there is urgent need for supporting countries without NECs to establish them; capacity strengthening where they exist; and creation of a regional network and joint ethical review mechanisms, whose membership would be open to all NECs of the Region.

  5. Eight-dimensional methodology for innovative thinking about the case and ethics of the Mount Graham, Large Binocular Telescope project.

    PubMed

    Berne, Rosalyn W; Raviv, Daniel

    2004-04-01

    This paper introduces the Eight Dimensional Methodology for Innovative Thinking (the Eight Dimensional Methodology), for innovative problem solving, as a unified approach to case analysis that builds on comprehensive problem solving knowledge from industry, business, marketing, math, science, engineering, technology, arts, and daily life. It is designed to stimulate innovation by quickly generating unique "out of the box" unexpected and high quality solutions. It gives new insights and thinking strategies to solve everyday problems faced in the workplace, by helping decision makers to see otherwise obscure alternatives and solutions. Daniel Raviv, the engineer who developed the Eight Dimensional Methodology, and paper co-author, technology ethicist Rosalyn Berne, suggest that this tool can be especially useful in identifying solutions and alternatives for particular problems of engineering, and for the ethical challenges which arise with them. First, the Eight Dimensional Methodology helps to elucidate how what may appear to be a basic engineering problem also has ethical dimensions. In addition, it offers to the engineer a methodology for penetrating and seeing new dimensions of those problems. To demonstrate the effectiveness of the Eight Dimensional Methodology as an analytical tool for thinking about ethical challenges to engineering, the paper presents the case of the construction of the Large Binocular Telescope (LBT) on Mount Graham in Arizona. Analysis of the case offers to decision makers the use of the Eight Dimensional Methodology in considering alternative solutions for how they can proceed in their goals of exploring space. It then follows that same process through the second stage of exploring the ethics of each of those different solutions. The LBT project pools resources from an international partnership of universities and research institutes for the construction and maintenance of a highly sophisticated, powerful new telescope. It will soon mark the erection of the world's largest and most powerful optical telescope, designed to see fine detail otherwise visible only from space. It also represents a controversial engineering project that is being undertaken on land considered to be sacred by the local, native Apache people. As presented, the case features the University of Virginia, and its challenges in consideration of whether and how to join the LBT project consortium.

  6. The ASEAN economic community and medical qualification

    PubMed Central

    Kittrakulrat, Jathurong; Jongjatuporn, Witthawin; Jurjai, Ravipol; Jarupanich, Nicha; Pongpirul, Krit

    2014-01-01

    Background In the regional movement toward ASEAN Economic Community (AEC), medical professions including physicians can be qualified to practice medicine in another country. Ensuring comparable, excellent medical qualification systems is crucial but the availability and analysis of relevant information has been lacking. Objective This study had the following aims: 1) to comparatively analyze information on Medical Licensing Examinations (MLE) across ASEAN countries and 2) to assess stakeholders’ view on potential consequences of AEC on the medical profession from a Thai perspective. Design To search for relevant information on MLE, we started with each country's national body as the primary data source. In case of lack of available data, secondary data sources including official websites of medical universities, colleagues in international and national medical student organizations, and some other appropriate Internet sources were used. Feasibility and concerns about validity and reliability of these sources were discussed among investigators. Experts in the region invited through HealthSpace.Asia conducted the final data validation. For the second objective, in-depth interviews were conducted with 13 Thai stakeholders, purposely selected based on a maximum variation sampling technique to represent the points of view of the medical licensing authority, the medical profession, ethicists and economists. Results MLE systems exist in all ASEAN countries except Brunei, but vary greatly. Although the majority has a national MLE system, Singapore, Indonesia, and Vietnam accept results of MLE conducted at universities. Thailand adopted the USA's 3-step approach that aims to check pre-clinical knowledge, clinical knowledge, and clinical skills. Most countries, however, require only one step. A multiple choice question (MCQ) is the most commonly used method of assessment; a modified essay question (MEQ) is the next most common. Although both tests assess candidate's knowledge, the Objective Structured Clinical Examination (OSCE) is used to verify clinical skills of the examinee. The validity of the medical license and that it reflects a consistent and high standard of medical knowledge is a sensitive issue because of potentially unfair movement of physicians and an embedded sense of domination, at least from a Thai perspective. Conclusions MLE systems differ across ASEAN countries in some important aspects that might be of concern from a fairness viewpoint and therefore should be addressed in the movement toward AEC. PMID:25215908

  7. The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.

    PubMed

    Mittelstadt, Brent Daniel; Floridi, Luciano

    2016-04-01

    The capacity to collect and analyse data is growing exponentially. Referred to as 'Big Data', this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: (1) informed consent, (2) privacy (including anonymisation and data protection), (3) ownership, (4) epistemology and objectivity, and (5) 'Big Data Divides' created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: (6) the dangers of ignoring group-level ethical harms; (7) the importance of epistemology in assessing the ethics of Big Data; (8) the changing nature of fiduciary relationships that become increasingly data saturated; (9) the need to distinguish between 'academic' and 'commercial' Big Data practices in terms of potential harm to data subjects; (10) future problems with ownership of intellectual property generated from analysis of aggregated datasets; and (11) the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices.

  8. Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast

    PubMed Central

    2012-01-01

    Background There is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome Trust programme in Kilifi, Kenya. Methods Following an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist. Findings The most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits. Conclusions Research staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. PMID:22726531

  9. Refining animal models in fracture research: seeking consensus in optimising both animal welfare and scientific validity for appropriate biomedical use

    PubMed Central

    Auer, Jorg A; Goodship, Allen; Arnoczky, Steven; Pearce, Simon; Price, Jill; Claes, Lutz; von Rechenberg, Brigitte; Hofmann-Amtenbrinck, Margarethe; Schneider, Erich; Müller-Terpitz, R; Thiele, F; Rippe, Klaus-Peter; Grainger, David W

    2007-01-01

    Background In an attempt to establish some consensus on the proper use and design of experimental animal models in musculoskeletal research, AOVET (the veterinary specialty group of the AO Foundation) in concert with the AO Research Institute (ARI), and the European Academy for the Study of Scientific and Technological Advance, convened a group of musculoskeletal researchers, veterinarians, legal experts, and ethicists to discuss, in a frank and open forum, the use of animals in musculoskeletal research. Methods The group narrowed the field to fracture research. The consensus opinion resulting from this workshop can be summarized as follows: Results & Conclusion Anaesthesia and pain management protocols for research animals should follow standard protocols applied in clinical work for the species involved. This will improve morbidity and mortality outcomes. A database should be established to facilitate selection of anaesthesia and pain management protocols for specific experimental surgical procedures and adopted as an International Standard (IS) according to animal species selected. A list of 10 golden rules and requirements for conduction of animal experiments in musculoskeletal research was drawn up comprising 1) Intelligent study designs to receive appropriate answers; 2) Minimal complication rates (5 to max. 10%); 3) Defined end-points for both welfare and scientific outputs analogous to quality assessment (QA) audit of protocols in GLP studies; 4) Sufficient details for materials and methods applied; 5) Potentially confounding variables (genetic background, seasonal, hormonal, size, histological, and biomechanical differences); 6) Post-operative management with emphasis on analgesia and follow-up examinations; 7) Study protocols to satisfy criteria established for a "justified animal study"; 8) Surgical expertise to conduct surgery on animals; 9) Pilot studies as a critical part of model validation and powering of the definitive study design; 10) Criteria for funding agencies to include requirements related to animal experiments as part of the overall scientific proposal review protocols. Such agencies are also encouraged to seriously consider and adopt the recommendations described here when awarding funds for specific projects. Specific new requirements and mandates related both to improving the welfare and scientific rigour of animal-based research models are urgently needed as part of international harmonization of standards. PMID:17678534

  10. If Medicare Were to Negotiate Drug Prices, How Would it Determine a ‘Fair’ Price for a Cancer Treatment?

    Cancer.gov

    Steven D. Pearson, MD, MSc, FRCP, is the Founder and President of the Institute for Clinical and Economic Review (ICER). ICER is a leader in bringing stakeholders together to collaborate in the evaluation of the comparative effectiveness of medical interventions. The Institute also helps translate comparative effectiveness information into distinctive formats for patients, clinicians, and policy makers to enable them to make better use of evidence throughout the health care system. Dr. Pearson is also a Lecturer in the Department of Population Medicine at Harvard Medical School, as well as serving as Visiting Scientist in the Department of Bioethics at the National Institutes of Health. He attended UCSF School of Medicine, completed his residency in internal medicine at Brigham and Women’s Hospital in Boston, and obtained a Master of Science Degree in Health Policy and Management at the Harvard School of Public Health. An internist, health services researcher, and ethicist, Dr. Pearson has served in many advisory and leadership roles in academia and government. He was awarded an Atlantic Fellowship from the British Government in 2004 and chose to serve as Senior Fellow at the National Institute for Health and Clinical Excellence (NICE). Returning to the United States in 2005, he was asked to serve for one year as Special Advisor, Technology and Coverage Policy, within the Coverage and Analysis Group at the Centers for Medicare and Medicaid Services. He has also served as Senior Fellow at America’s Health Insurance Plans, as the Vice Chair of the Medicare Evidence Development and Coverage Advisory Committee (MedCAC), and as a Member of the Board of Directors of Health Technology Assessment International (HTAi). Dr. Pearson’s ongoing academic work combines efforts in comparative effectiveness research, health policy, and bioethics. His published work includes numerous articles and commentaries on the role of evidence in the health care system, and the book No Margin, No Mission: Health Care Organizations and the Quest for Ethical Excellence. If you are a person with a disability and require an assistive device, services or other reasonable accommodations to participate in this activity, please contact the Cancer Prevention Fellowship Program at (240) 276-5626 at least one week in advance of the lecture date to discuss your accommodation needs.

  11. The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists

    PubMed Central

    Boycott, Kym; Hartley, Taila; Adam, Shelin; Bernier, Francois; Chong, Karen; Fernandez, Bridget A; Friedman, Jan M; Geraghty, Michael T; Hume, Stacey; Knoppers, Bartha M; Laberge, Anne-Marie; Majewski, Jacek; Mendoza-Londono, Roberto; Meyn, M Stephen; Michaud, Jacques L; Nelson, Tanya N; Richer, Julie; Sadikovic, Bekim; Skidmore, David L; Stockley, Tracy; Taylor, Sherry; van Karnebeek, Clara; Zawati, Ma'n H; Lauzon, Julie; Armour, Christine M

    2015-01-01

    Purpose and scope The aim of this Position Statement is to provide recommendations for Canadian medical geneticists, clinical laboratory geneticists, genetic counsellors and other physicians regarding the use of genome-wide sequencing of germline DNA in the context of clinical genetic diagnosis. This statement has been developed to facilitate the clinical translation and development of best practices for clinical genome-wide sequencing for genetic diagnosis of monogenic diseases in Canada; it does not address the clinical application of this technology in other fields such as molecular investigation of cancer or for population screening of healthy individuals. Methods of statement development Two multidisciplinary groups consisting of medical geneticists, clinical laboratory geneticists, genetic counsellors, ethicists, lawyers and genetic researchers were assembled to review existing literature and guidelines on genome-wide sequencing for clinical genetic diagnosis in the context of monogenic diseases, and to make recommendations relevant to the Canadian context. The statement was circulated for comment to the Canadian College of Medical Geneticists (CCMG) membership-at-large and, following incorporation of feedback, approved by the CCMG Board of Directors. The CCMG is a Canadian organisation responsible for certifying medical geneticists and clinical laboratory geneticists, and for establishing professional and ethical standards for clinical genetics services in Canada. Results and conclusions Recommendations include (1) clinical genome-wide sequencing is an appropriate approach in the diagnostic assessment of a patient for whom there is suspicion of a significant monogenic disease that is associated with a high degree of genetic heterogeneity, or where specific genetic tests have failed to provide a diagnosis; (2) until the benefits of reporting incidental findings are established, we do not endorse the intentional clinical analysis of disease-associated genes other than those linked to the primary indication; and (3) clinicians should provide genetic counselling and obtain informed consent prior to undertaking clinical genome-wide sequencing. Counselling should include discussion of the limitations of testing, likelihood and implications of diagnosis and incidental findings, and the potential need for further analysis to facilitate clinical interpretation, including studies performed in a research setting. These recommendations will be routinely re-evaluated as knowledge of diagnostic and clinical utility of clinical genome-wide sequencing improves. While the document was developed to direct practice in Canada, the applicability of the statement is broader and will be of interest to clinicians and health jurisdictions internationally. PMID:25951830

  12. The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists.

    PubMed

    Boycott, Kym; Hartley, Taila; Adam, Shelin; Bernier, Francois; Chong, Karen; Fernandez, Bridget A; Friedman, Jan M; Geraghty, Michael T; Hume, Stacey; Knoppers, Bartha M; Laberge, Anne-Marie; Majewski, Jacek; Mendoza-Londono, Roberto; Meyn, M Stephen; Michaud, Jacques L; Nelson, Tanya N; Richer, Julie; Sadikovic, Bekim; Skidmore, David L; Stockley, Tracy; Taylor, Sherry; van Karnebeek, Clara; Zawati, Ma'n H; Lauzon, Julie; Armour, Christine M

    2015-07-01

    The aim of this Position Statement is to provide recommendations for Canadian medical geneticists, clinical laboratory geneticists, genetic counsellors and other physicians regarding the use of genome-wide sequencing of germline DNA in the context of clinical genetic diagnosis. This statement has been developed to facilitate the clinical translation and development of best practices for clinical genome-wide sequencing for genetic diagnosis of monogenic diseases in Canada; it does not address the clinical application of this technology in other fields such as molecular investigation of cancer or for population screening of healthy individuals. Two multidisciplinary groups consisting of medical geneticists, clinical laboratory geneticists, genetic counsellors, ethicists, lawyers and genetic researchers were assembled to review existing literature and guidelines on genome-wide sequencing for clinical genetic diagnosis in the context of monogenic diseases, and to make recommendations relevant to the Canadian context. The statement was circulated for comment to the Canadian College of Medical Geneticists (CCMG) membership-at-large and, following incorporation of feedback, approved by the CCMG Board of Directors. The CCMG is a Canadian organisation responsible for certifying medical geneticists and clinical laboratory geneticists, and for establishing professional and ethical standards for clinical genetics services in Canada. Recommendations include (1) clinical genome-wide sequencing is an appropriate approach in the diagnostic assessment of a patient for whom there is suspicion of a significant monogenic disease that is associated with a high degree of genetic heterogeneity, or where specific genetic tests have failed to provide a diagnosis; (2) until the benefits of reporting incidental findings are established, we do not endorse the intentional clinical analysis of disease-associated genes other than those linked to the primary indication; and (3) clinicians should provide genetic counselling and obtain informed consent prior to undertaking clinical genome-wide sequencing. Counselling should include discussion of the limitations of testing, likelihood and implications of diagnosis and incidental findings, and the potential need for further analysis to facilitate clinical interpretation, including studies performed in a research setting. These recommendations will be routinely re-evaluated as knowledge of diagnostic and clinical utility of clinical genome-wide sequencing improves. While the document was developed to direct practice in Canada, the applicability of the statement is broader and will be of interest to clinicians and health jurisdictions internationally. 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.

  13. Informing the patient about a fatal disease: from paternalism to autonomy--the Jewish view.

    PubMed

    Rosner, Fred

    2004-01-01

    Until the late 20th century, withholding a fatal diagnosis functioned as a paradigm for sharing other medical information with patients. The obligation of confidentiality was emphasized and disclosure was ignored. Ethicists perceived the doctor-patient relationship as oriented to therapy, reassurance, and avoiding harm. Physicians were to provide lies and truth instrumentally only insofar as they aided therapy (Jameton, A. Information disclosure. Ethical issues. In Encyclopedia of Bioethics. Revised Ed.; Reich, T.N.T., Ed.; MacMillan: New York, 1995; Vol. 3, 1225-1232). This was the era of paternalism. Since the 1960s, opinion on the role of disclosure was changed rapidly in the United States stimulated by the patient's rights movement and the rise of bioethics. The current climate supports honest and complete disclosure of medical information. In 1972, the Board of Trustees of the American Hospital Association affirmed A Patient's Bill of Rights, which states that the patient has the right to obtain from his physician complete current information concerning his diagnosis, treatment, and prognosis in terms the patient can be reasonably expected to understand (Lee, A.L.; Jacobs, G. Workshop airs patient's rights. Hospitals 1973, 47, 39-43). Bioethicists now favor full disclosure as a means of respecting patient autonomy (Katz, J. The Silent World of Doctor and Patient; Free Press: New York, 1984). The American College of Physician Ethics Manual states that disclosure to patients is a fundamental ethical requirement (American College of Physicians. American College of Physicians Ethics Manual, 3rd Ed. Ann. Intern. Med. 1992, 117, 947-960). The era of patient autonomy ended the traditional pattern of withholding information, which was characteristic of the previous era of paternalism. The Jewish view toward full disclosure of a fatal illness to a patient and especially a patient who is terminally ill is in general a negative one because of the fear that the patient may give up hope, suffer severe mental anguish (tiruf hadaat), become despondent, and die sooner than otherwise. Shortening a patient's life is strictly forbidden because Judaism espouses the concept that God given life is sacred, even only a short period thereof. Disclosure should be couched in the context of optimism. The most positive outlook should be imparted to the patient. Disclosure must be imparted with compassion, sensitivity and hope thus giving the patient an opportunity to "set his house in order" and recite the confessional penitent prayer known as viduy.

  14. Ethical issues in human reproduction: Protestant perspectives in the light of European Protestant and Reformed Churches.

    PubMed

    Birkhäuser, Martin

    2013-11-01

    Protestantism is not a centralized religion. It is composed by many independent Churches having different moral and ethical standards. This review concentrates on the ethical principles prevalent in most modern European Reformed Churches. It does not intend to discuss the ethical principles of many other Protestant Churches present mainly in the USA. The common foundations of Protestant theology are the "five sola ("Sola scriptura", Sola fide", "Sola gratia", Solus Christus or Solo Christo", "Soli deo gloria"). In opposition to the Catholic Church, no intermediary is needed between the Bible and the believer. As a consequence, Protestant Churches have no Magisterium, such as the Catholic Church. Therefore Protestant Churches cannot declare a certain position to be the "official position". Each Christian is personally responsible for all his acts, including his ethical behaviour. There is no complete unanimity among all Protestants on ethics or on any other issue. Human dignity, personal rights and self-determination have to be respected in each ethical consideration. The supersession of the Old Mosaic Covenant (including traditional Jewish law or Halakhah, maintained in Catholicism) by the New Covenant and by Christian Theology has an important impact on Protestant ethics in reproductive medicine. In the New Covenant, the Protestants Churches did not maintain the mandatory obligation from the old Mosaic Covenant to be fruitful and to multiply: there is no divine obligation by God to procreate. As a consequence, contraception is not a sin and not unethical. The status of the embryo is the key for the ethical consideration of all methods used in reproductive medicine. Most representatives of modern Protestant theology and bioethics defend the opinion that the embryo is not an independent human being as is the newborn child. For most Protestant bio-ethicists, as long as an embryo has no nervous system, no organs and no pain receptors, it cannot be seen as a human being sensu strictiori: the zygote is not yet a "human being". The ethical right to be protected prenatally increases gradually with the age and the development of the embryo. Following this so-called gradualist interpretation, the early stages of an embryo merit ethically a special status: although they have already "human life", they are not yet a "human being". All ethical considerations in modern reproductive medicine discussed in this review are based on this concept of the status of the embryo. It depends largely on the acceptance or rejection of this special status of the embryo, if a Protestant considers a certain method in reproductive medicine to be ethical or unethical.

  15. RECONCEPTUALIZING CONSENT FOR DIRECT-TO-CONSUMER HEALTH SERVICES.

    PubMed

    Spector-Bagdady, Kayte

    2015-01-01

    The market for direct-to-consumer (DTC) health services continues to grow rapidly with former patients converting to customers for the opportunity to purchase varied diagnostic tests without the involvement of their clinician. For the first time a DTC genetic testing company is advertising health-related reports "that meet [Food and Drug Administration] standards for being clinically and scientifically valid." Ethicists and regulatory agencies alike have recognized the need for a more informed transaction in the DTC context, but how should we classify a commercial transaction for something normally protected by a duty of care? How can we assure informed agreements in an industry with terms and conditions as varied as the services performed? The doctrine of "informed consent" began as an ethical construct building on the promise of beneficence in the clinical relationship and elevating the principle of autonomy--but in the DTC context should we hold providers to legal standards of informed consent and associated medical malpractice liability, or contractual obligations where consumers would seek remedy for breach? This Article analyzes the fine balance that must be struck in an industry where companies are selling services for entertainment or non-medical purposes that possess the capacity to produce serious and disquieting medical information. It begins by reviewing current standards of consent in the clinical setting from both a legal and ethical perspective and then lays forth current standards for DTC consent using two currently controversial case studies: that of keepsake fetal ultrasound and genetic testing. DTC keepsake ultrasound and genetic testing providers attempt to de-medicalize the devices used for these procedures from their intended medical uses to non-medical uses. But while keepsake ultrasound is marketed as "intended for entertainment purposes only," it can provide medical information as an incidental finding. 23andMe currently purports to be the only DTC genetics service that "includes" reports that meet FDA qualifications, despite disclaimers of intent to "provide medical advice." The attempted de-medicalization of these devices, therefore, has not been fully transformative, and DTC providers should have more robust ethical and legal duties than the average goods and services seller. This Article delineates these responsibilities, beginning with ethical duties surrounding marketing, entering into, and providing DTC services. It then turns to the legal paradigms necessary to enable, or at least allow for, DTC providers to meet these ethical obligations. While it argues that contractual, as opposed to fiduciary, requirements are most appropriate and that waivers of liability will likely be upheld, it also advocates for a heightened expectation of disclosure during contracting.

  16. Seeking to reduce nonbeneficial treatment in the ICU: an exploratory trial of proactive ethics intervention*.

    PubMed

    Andereck, William S; McGaughey, J Westly; Schneiderman, Lawrence J; Jonsen, Albert R

    2014-04-01

    To investigate whether the proactive intervention of a clinical ethicist in cases of prolonged lengths of stay in a critical care setting reduces nonbeneficial treatment while increasing perceived patient/surrogate and provider satisfaction and reducing associated costs. Nonbeneficial treatment is defined here as the use of life-sustaining treatments delivered to patients who had been in the ICU for 5 days and did not survive to discharge. Prospective randomized exploratory trial from October 2007 to February 2010 in the adult ICU of a large, urban, not-for-profit community hospital. Medical/surgical ICU of California Pacific Medical Center, a large tertiary not-for-profit hospital in San Francisco, CA. Three hundred eighty-four patients with ICU lengths of stay of five days or greater. Patients were randomized to either an intervention arm (Proactive Ethics Intervention) (n = 174) or control arm (n = 210). There were 56 patients in the intervention arm and 52 patients in the control arm who did not survive to discharge. Proactive ethics intervention involves a trained bioethicist in the care of all ICU patients with a length of stay greater than or equal to 5 days. The intervention used a nine step process model designed to look for manifest or latent ethics conflicts and address them. The primary outcome measures were days in the ICU; overall length of hospital stay; mortality; nonbeneficial treatments, for example, provision of nutritional support; surrogate and survivor satisfaction, and cost. The intervention and control arms showed no significant difference in mortality. Proactive Ethics Intervention, at the 95% CI, was not associated with reductions of overall length of stay (23 d for intervention and 21 d for control, p = 0.74), ICU days (11 in each arm, p = 0.91), life-sustaining treatments (days on ventilator: intervention, 14.6; control, 13.7; p = 0.74; days receiving artificial nutrition and hydration: intervention, 16.5; control, 15.9; p = 0.85), or cost ($167,350.00 for intervention and $164,670.00 for control, p =0.92) in patients who did not survive to discharge. Perceptions of quality of care by patients and providers showed no difference between intervention and control arms. Our study finds that Proactive Ethics Intervention, provided to all patients in a critical care setting for 5 days, and before an ethical conflict has been recognized, is ineffective in reducing overall length of hospital stay, ICU days, nonbeneficial treatments, or hospital costs. It is also not effective in increasing perceptions of quality of care by patients or providers.

  17. The impact of genetic modification of human foods in the 21st century: a review.

    PubMed

    Uzogara, S G

    2000-05-01

    Genetic engineering of food is the science which involves deliberate modification of the genetic material of plants or animals. It is an old agricultural practice carried on by farmers since early historical times, but recently it has been improved by technology. Many foods consumed today are either genetically modified (GM) whole foods, or contain ingredients derived from gene modification technology. Billions of dollars in U.S. food exports are realized from sales of GM seeds and crops. Despite the potential benefits of genetic engineering of foods, the technology is surrounded by controversy. Critics of GM technology include consumer and health groups, grain importers from European Union (EU) countries, organic farmers, environmentalists, concerned scientists, ethicists, religious rights groups, food advocacy groups, some politicians and trade protectionists. Some of the specific fears expressed by opponents of GM technology include alteration in nutritional quality of foods, potential toxicity, possible antibiotic resistance from GM crops, potential allergenicity and carcinogenicity from consuming GM foods. In addition, some more general concerns include environmental pollution, unintentional gene transfer to wild plants, possible creation of new viruses and toxins, limited access to seeds due to patenting of GM food plants, threat to crop genetic diversity, religious, cultural and ethical concerns, as well as fear of the unknown. Supporters of GM technology include private industries, research scientists, some consumers, U.S. farmers and regulatory agencies. Benefits presented by proponents of GM technology include improvement in fruit and vegetable shelf-life and organoleptic quality, improved nutritional quality and health benefits in foods, improved protein and carbohydrate content of foods, improved fat quality, improved quality and quantity of meat, milk and livestock. Other potential benefits are: the use of GM livestock to grow organs for transplant into humans, increased crop yield, improvement in agriculture through breeding insect, pest, disease, and weather resistant crops and herbicide tolerant crops, use of GM plants as bio-factories to yield raw materials for industrial uses, use of GM organisms in drug manufacture, in recycling and/or removal of toxic industrial wastes. The potential risks and benefits of the new technology to man and the environment are reviewed. Ways of minimizing potential risks and maximizing the benefits of GM foods are suggested. Because the benefits of GM foods apparently far outweigh the risks, regulatory agencies and industries involved in GM food business should increase public awareness in this technology to enhance worldwide acceptability of GM foods. This can be achieved through openness, education, and research.

  18. Personalized medicine beyond genomics: alternative futures in big data-proteomics, environtome and the social proteome.

    PubMed

    Özdemir, Vural; Dove, Edward S; Gürsoy, Ulvi K; Şardaş, Semra; Yıldırım, Arif; Yılmaz, Şenay Görücü; Ömer Barlas, I; Güngör, Kıvanç; Mete, Alper; Srivastava, Sanjeeva

    2017-01-01

    No field in science and medicine today remains untouched by Big Data, and psychiatry is no exception. Proteomics is a Big Data technology and a next generation biomarker, supporting novel system diagnostics and therapeutics in psychiatry. Proteomics technology is, in fact, much older than genomics and dates to the 1970s, well before the launch of the international Human Genome Project. While the genome has long been framed as the master or "elite" executive molecule in cell biology, the proteome by contrast is humble. Yet the proteome is critical for life-it ensures the daily functioning of cells and whole organisms. In short, proteins are the blue-collar workers of biology, the down-to-earth molecules that we cannot live without. Since 2010, proteomics has found renewed meaning and international attention with the launch of the Human Proteome Project and the growing interest in Big Data technologies such as proteomics. This article presents an interdisciplinary technology foresight analysis and conceptualizes the terms "environtome" and "social proteome". We define "environtome" as the entire complement of elements external to the human host, from microbiome, ambient temperature and weather conditions to government innovation policies, stock market dynamics, human values, political power and social norms that collectively shape the human host spatially and temporally. The "social proteome" is the subset of the environtome that influences the transition of proteomics technology to innovative applications in society. The social proteome encompasses, for example, new reimbursement schemes and business innovation models for proteomics diagnostics that depart from the "once-a-life-time" genotypic tests and the anticipated hype attendant to context and time sensitive proteomics tests. Building on the "nesting principle" for governance of complex systems as discussed by Elinor Ostrom, we propose here a 3-tiered organizational architecture for Big Data science such as proteomics. The proposed nested governance structure is comprised of (a) scientists, (b) ethicists, and (c) scholars in the nascent field of "ethics-of-ethics", and aims to cultivate a robust social proteome for personalized medicine. Ostrom often noted that such nested governance designs offer assurance that political power embedded in innovation processes is distributed evenly and is not concentrated disproportionately in a single overbearing stakeholder or person. We agree with this assessment and conclude by underscoring the synergistic value of social and biological proteomes to realize the full potentials of proteomics science for personalized medicine in psychiatry in the present era of Big Data.

  19. Comprehensive embryo testing. Experts' opinions regarding future directions: an expert panel study on comprehensive embryo testing.

    PubMed

    Hens, Kristien; Dondorp, Wybo J; Geraedts, Joep P M; de Wert, Guido M

    2013-05-01

    What do scientists in the field of preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS) consider to be the future direction of comprehensive embryo testing? Although there are many biological and technical limitations, as well as uncertainties regarding the meaning of genetic variation, comprehensive embryo testing will impact the IVF/PGD practice and a timely ethical reflection is needed. Comprehensive testing using microarrays is currently being introduced in the context of PGD and PGS, and it is to be expected that whole-genome sequencing will also follow. Current ethical and empirical sociological research on embryo testing focuses on PGD as it is practiced now. However, empirical research and systematic reflection regarding the impact of comprehensive techniques for embryo testing is missing. In order to understand the potential of this technology and to be able to adequately foresee its implications, we held an expert panel with seven pioneers in PGD. We conducted an expert panel in October 2011 with seven PGD pioneers from Belgium, The Netherlands, Germany and the UK. Participants expected the use of comprehensive techniques in the context of PGD. However, the introduction of these techniques in embryo testing requires timely ethical reflection as it involves a shift from choosing an embryo without a particular genetic disease (i.e. PGD) or most likely to result in a successful pregnancy (i.e. PGS) to choosing the best embryo based on a much wider set of criteria. Such ethical reflection should take account of current technical and biological limitations and also of current uncertainties with regard to the meaning of genetic variance. However, ethicists should also not be afraid to look into the future. There was a general agreement that embryo testing will be increasingly preceded by comprehensive preconception screening, thus enabling smart combinations of genetic testing. The group was composed of seven participants from four Western Europe countries. As willingness to participate in this study may be connected with expectations regarding the pace and direction of future developments, selection bias cannot be excluded. The introduction of comprehensive screening techniques in embryo testing calls for further ethical reflection that is grounded in empirical work. Specifically, there is a need for studies querying the opinions of infertile couples undergoing IVF/PGS regarding the desirability of embryo screening beyond aneuploidy. This research was supported by the CSG, Centre for Society and Life Sciences (project number: 70.1.074). The authors declare no conflict of interest. N/A.

  20. Identifying the gaps: Armenian health care legislation and human rights in patient care protections.

    PubMed

    Zopunyan, Violeta; Krmoyan, Suren; Quinn, Ryan

    2013-12-12

    Since the collapse of the Soviet Union, the Republic of Armenia has undergone an extensive legislative overhaul. Although a number of developments have aimed to improve the quality and accessibility of Armenia's health care system, a host of factors has prevented the country from fully introducing measures to ensure respect for human rights in patient care. In particular, inadequate health care financing continues to oblige patients to make both formal and informal payments to obtain basic medical care and services. More generally, a lack of oversight and monitoring mechanisms has obstructed the implementation of Armenia's commitments to human rights in several international agreements. Within the framework of a broader project on promoting human rights in patient care, research was carried out to examine Armenia’s health care legislation with the aim of identifying gaps in comparison with international and regional standards. This research was designed using the 14 rights enshrined in the European Charter on Patient Rights as guiding principles, along with domestic legal acts relevant to the rights of health care providers. The gaps analysis revealed numerous problems with Armenian legislation governing the relationships between stakeholders in health care service delivery. It also identified several practical inconsistencies with the international legal instruments ratified by the Armenian government. These legislative shortcomings are illustrated by highlighting key health-related rights violations experienced by patients and their health care providers, and by indicating opportunities for improved rights protections. A full list of human rights relevant to patient care and recommendations for promoting them in the Armenian context is provided in Tables 1 and 2. A number of initiatives must be undertaken in order to promote the full spectrum of human rights in patient care in Armenia. This section highlights certain recommendations flowing from the findings of the gap analysis, including further work needed to make pain relief medication more accessible to patients with chronic or terminal illness. New initiatives are also suggested, such as the establishment of an independent body of medical professionals and ethicists mandated to resolve disputes between patients and providers, and other efforts intended to ensure that the rights of patients and providers alike are upheld and respected. Copyright © 2013 Zopunyan, Krmoyan, and Quinn. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

  1. Ethical issues in HIV prevention research with people who inject drugs.

    PubMed

    Sugarman, Jeremy; Rose, Scott M; Metzger, David

    2014-04-01

    Injection drug use continues to significantly contribute to new infections with HIV. Moreover, conducting HIV prevention research with people who inject drugs (PWIDs) can be complicated for an array of practical, social, legal, and ethical reasons. It is critical that these research efforts are sensitive to the particular vulnerabilities associated with injection drug use as well as those related to being at risk of acquiring HIV so as to minimize harm to participants in research. To describe how we addressed some of these ethical challenges during the course of a large-scale multinational randomized HIV prevention trial involving PWIDs, which was successfully completed. The ethical issues encountered during the life cycle of the trial were cataloged by the principal investigator, study coordinator, and ethicist working on the trial. Relevant study documents were then reviewed to provide pertinent details. The ethical issues unique to the trial were then described. Before implementation, the trial faced particularly complex challenges related to the vulnerability of PWIDs, where HIV seroincidence rates in the population were high and legal policies and stigma regarding injection drug use was severe. Accordingly, a rapid policy assessment was commissioned, and a series of community engagement activities were conducted. During the trial, in addition to using careful standard operating procedures regarding all aspects of trial conduct and extensive staff training, the trial standardized informed consent procedures and assessed them. Furthermore, social harms were monitored along with physical harms and adverse events. Following the decision to close the study, it was critical to develop an orderly and safe process for closing it. The issue of post-trial access to the study medication and a complex intervention also surfaced for consideration. The issues described in this article are necessarily limited to how they manifested themselves within the context of a particular trial that was conducted in two countries. In addition, other stakeholders may have divergent views on the ethical issues described and may also have identified additional ethical issues that would warrant examination. Adopting similar approaches to addressing ethical issues in future research promises to facilitate this work so that needed strategies to prevent HIV infection among PWIDs can be safely and appropriately tested. Future trials enrolling PWIDs who are at risk of detainment should identify ways of mapping closely their experiences and perceptions in order to better apprehend some of the ethical issues at stake. In addition, scholarly and policy work needs to address the ethical issues related to post-trial access to multi-modal interventions that may be desired by participants, but are not shown to be effective in achieving the primary outcomes of the study.

  2. Establishing HIV treatment as prevention in the HIV Prevention Trials Network 052 randomized trial: an ethical odyssey.

    PubMed

    Cohen, Myron S; McCauley, Marybeth; Sugarman, Jeremy

    2012-06-01

    Obtaining the definitive data necessary to determine the safety and efficacy of using antiretroviral treatment (ART) to reduce the sexual transmission of HIV in heterosexual couples encountered an array of ethical challenges that threatened to compromise HIV Prevention Trials Network (HPTN) 052, the multinational clinical trial addressing this issue that has profound public health implications. To describe and analyze the major ethical challenges faced in HPTN 052. The ethical issues and modifications of HPTN 052 in response to these issues were cataloged by the principal investigator, the lead coordinator, and the ethicist working on the trial. The major ethical issues that were unique to the trial were then described and analyzed in light of the published literature as well as guidances and policies. The ethical challenges that must be addressed in many clinical trials, such as those related to obtaining informed consent and making provisions for ancillary care, are not described. When HPTN 052 was being designed, ethical questions emerged related to the relevance of the research question itself given data from observational research and a range of beliefs about the appropriate means of preventing and treating HIV infection and AIDS. Furthermore, ethical challenges were faced regarding site selection since there was a scientific need to conduct the research in settings where HIV incidence was high, but alternatives to study participation should be available. As in most HIV-prevention research, ethical questions surrounded the determination of the appropriate prevention package for all of those enrolled. During the course of the trial, guidance documents and policies emerged that were of direct relevance to the research questions, calling for a balancing of concerns for the research subjects and trial integrity. When the study results were made public, there was a need to ensure access to the treatment shown to be effective that in some cases differed from the guidelines used at the sites where the research was being conducted. In addition, questions were raised about whether there was an obligation to notify subjects about 'unlinked' transmissions of HIV, that is, infections acquired from someone other than the designated sexual partner enrolled in the study. The ethical issues described are limited to those discerned by the authors and not those of other stakeholders who may have identified additional issues or had a different perspective in analyzing them. Understanding the ethical challenges faced in HPTN 052 promises to inform the design and conduct of future complex, long-term clinical trials aimed at addressing critical scientific and public health questions, where data and practice patterns emerge over the course of the trial.

  3. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

    PubMed Central

    Cyr, Alaina B; Arbuckle, Luk; Ferris, Lorraine E

    2017-01-01

    Background The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. Objective Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. Methods We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? Results Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. Conclusions Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences. PMID:28385682

  4. Moral theological analysis of direct versus indirect abortion.

    PubMed

    Haas, John M

    2017-08-01

    Cases of a vital conflict, where the lives of both the mother and child are at risk during pregnancy, have been the subject of recent vigorous debate. The basic principles put forth in the Ethical and Religious Directives are reviewed, as is the principle of double effect. An illustrative case of severe cardiomyopathy in a pregnant woman is described and it is noted that the principle of double effect would not apply. Counter arguments are noted, focusing on Martin Rhonheimer who posits that in the case of vital conflicts, such as performing a craniotomy on a baby stuck in the birth canal, taking the baby's life does not constitute a direct abortion because moral norms do not apply in the extreme conflict situation where both mother and child will die. He states that the death of the fetus is not intentional in these cases. He overlooks "how the life is being saved" and that a choice has been made, which implies a moral act, not just a physical one. Rhonheimer wants to make his moral judgment solely on the basis of intention, prescinding from what actually occurs in the physical world of cause and effect. This is clearly against the teaching in Evangelium vitae. Ethics deal with the deliberate chosen actions in space and time of embodied human beings; it deals inescapably with material actions, with specifications of intentions. Rhonheimer states, "a killing or an abortion is 'direct,' not because the death of the fetus is caused in some physically direct way, but because it is willed as the means to an end." However the death of the child cannot be excluded from the act and is therefore of necessity included in it. What the acting person chooses includes what happens physically in this act. If the action theory proposed by Rhonheimer is accepted, it could be very difficult to avoid death-dealing actions from taking place in Catholic hospitals. This is a moral analysis of cases of "vital conflicts," where the lives of both the mother and child are at risk during a pregnancy. It is stated by some ethicists that directly killing the baby to save the life of the mother is morally justified, even when the direct action of the doctor is to kill the baby. Examples are provided to illustrate how Catholic moral principles apply. It is concluded that direct killing, regardless of the intention, is not justified. The doctor should always work to try and save the lives of both the mother and the child. One should never be directly killed even if the intention is to save the life of the other.

  5. Obstacles to European research projects with data and tissue: solutions and further challenges.

    PubMed

    van Veen, Evert-Ben

    2008-07-01

    Most European biomedical research projects are about data. Research with tissue is about data as well; data will accompany the tissue, and data will be derived from analysing the tissue. Data can be merged with data from various sources, copied and re-analysed in the context of European projects. Privacy enhancing technologies (PET) should be used for transferring data from participating centres to the level where data are being merged. PET provide coding techniques which allow donors to be anonymous and still uniquely discernable. It is defended that under certain conditions two-way coded data can be considered as anonymous data in the sense of the European Data Protection Directive. Divergent interpretations of this Directive and most of all about the concept of coded-anonymous data is one of the main obstacles to observational research in Europe. The Data Protection Authorities will have to relax the extremely high threshold before data cannot be considered personal data anymore. Arguments are given for such relaxation. Besides the logic and logistics of data transfer in European projects, it is also about trust and a realistic risk assessment. In spite of the massive dataflow in European research projects no breach of confidentiality has ever been reported. The ethical rationale of such projects can be based on the principles of citizenship and solidarity provided that certain safeguards are met by which that research will remain observational. However, if the project does not preclude individual feed-back on the outcomes of research, as in theory would be possible with two-way coded tissue, that tissue cannot be considered anonymous. It is argued that in most tissuebanking projects individual feed-back should be excluded. Tissuebanking for research should not turn into medical screening without applying the established criteria for screening to it. If individual feed-back is not foreseen, two-way tissue should be considered anonymous, under the same conditions as two-way coded data. Good research governance is proposed as the way forward in the longer run. Good research governance is about a fair balance between the interests of all stakeholders. It should make the basic principles transparent on which observational research projects are based in line with European solidarity-based healthcare systems. It should encompass principles on how the general results of research will be disseminated, 'conflict of interests' policies, how the issues of intellectual property rights are dealt with, how the confidentiality of personal data of donors is maintained, etc. This should not become an extra bureaucratic layer. A good research governance framework should not establish rules but principles which provide enough flexibility for the specifics of a project, according to the 'comply or explain' principle. Such research governance should be developed bottom-up, by researchers together with the most interested stakeholders, patient organisations. Patients as 'biosocial citizens' are the natural allies of researchers against the 'paternalistic attitudes' of some ethicists and regulators.

  6. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment.

    PubMed

    Bender, Jacqueline Lorene; Cyr, Alaina B; Arbuckle, Luk; Ferris, Lorraine E

    2017-04-06

    The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered "sensitive" personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public's expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences. ©Jacqueline Lorene Bender, Alaina B Cyr, Luk Arbuckle, Lorraine E Ferris. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 06.04.2017.

  7. Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension.

    PubMed

    Calvert, Melanie; Kyte, Derek; Mercieca-Bebber, Rebecca; Slade, Anita; Chan, An-Wen; King, Madeleine T; Hunn, Amanda; Bottomley, Andrew; Regnault, Antoine; Chan, An-Wen; Ells, Carolyn; O'Connor, Daniel; Revicki, Dennis; Patrick, Donald; Altman, Doug; Basch, Ethan; Velikova, Galina; Price, Gary; Draper, Heather; Blazeby, Jane; Scott, Jane; Coast, Joanna; Norquist, Josephine; Brown, Julia; Haywood, Kirstie; Johnson, Laura Lee; Campbell, Lisa; Frank, Lori; von Hildebrand, Maria; Brundage, Michael; Palmer, Michael; Kluetz, Paul; Stephens, Richard; Golub, Robert M; Mitchell, Sandra; Groves, Trish

    2018-02-06

    Patient-reported outcome (PRO) data from clinical trials can provide valuable evidence to inform shared decision making, labeling claims, clinical guidelines, and health policy; however, the PRO content of clinical trial protocols is often suboptimal. The SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) statement was published in 2013 and aims to improve the completeness of trial protocols by providing evidence-based recommendations for the minimum set of items to be addressed, but it does not provide PRO-specific guidance. To develop international, consensus-based, PRO-specific protocol guidance (the SPIRIT-PRO Extension). The SPIRIT-PRO Extension was developed following the Enhancing Quality and Transparency of Health Research (EQUATOR) Network's methodological framework for guideline development. This included (1) a systematic review of existing PRO-specific protocol guidance to generate a list of potential PRO-specific protocol items (published in 2014); (2) refinements to the list and removal of duplicate items by the International Society for Quality of Life Research (ISOQOL) Protocol Checklist Taskforce; (3) an international stakeholder survey of clinical trial research personnel, PRO methodologists, health economists, psychometricians, patient advocates, funders, industry representatives, journal editors, policy makers, ethicists, and researchers responsible for evidence synthesis (distributed by 38 international partner organizations in October 2016); (4) an international Delphi exercise (n = 137 invited; October 2016 to February 2017); and (5) consensus meeting (n = 30 invited; May 2017). Prior to voting, consensus meeting participants were informed of the results of the Delphi exercise and given data from structured reviews evaluating the PRO protocol content of 3 defined samples of trial protocols. The systematic review identified 162 PRO-specific protocol recommendations from 54 sources. The ISOQOL Taskforce (n = 21) reduced this to 56 items, which were considered by 138 international stakeholder survey participants and 99 Delphi panelists. The final wording of the SPIRIT-PRO Extension was agreed on at a consensus meeting (n = 29 participants) and reviewed by external group of experts during a consultation period. Eleven extensions and 5 elaborations to the SPIRIT 2013 checklist were recommended for inclusion in clinical trial protocols in which PROs are a primary or key secondary outcome. Extension items focused on PRO-specific issues relating to the trial rationale, objectives, eligibility criteria, concepts used to evaluate the intervention, time points for assessment, PRO instrument selection and measurement properties, data collection plan, translation to other languages, proxy completion, strategies to minimize missing data, and whether PRO data will be monitored during the study to inform clinical care. The SPIRIT-PRO guidelines provide recommendations for items that should be addressed and included in clinical trial protocols in which PROs are a primary or key secondary outcome. Improved design of clinical trials including PROs could help ensure high-quality data that may inform patient-centered care.

  8. Diseases of poverty and lifestyle, well-being and human development.

    PubMed

    Singh, Ajai R; Singh, Shakuntala A

    2008-01-01

    The problems of the haves differ substantially from those of the have-nots. Individuals in developing societies have to fight mainly against infectious and communicable diseases, while in the developed world the battles are mainly against lifestyle diseases. Yet, at a very fundamental level, the problems are the same-the fight is against distress, disability, and premature death; against human exploitation and for human development and self-actualisation; against the callousness to critical concerns in regimes and scientific power centres.While there has been great progress in the treatment of individual diseases, human pathology continues to increase. Sicknesses are not decreasing in number, they are only changing in type.The primary diseases of poverty like TB, malaria, and HIV/AIDS-and the often co-morbid and ubiquitous malnutrition-take their toll on helpless populations in developing countries. Poverty is not just income deprivation but capability deprivation and optimism deprivation as well.While life expectancy may have increased in the haves, and infant and maternal mortality reduced, these gains have not necessarily ensured that well-being results. There are ever-multiplying numbers of individuals whose well-being is compromised due to lifestyle diseases. These diseases are the result of faulty lifestyles and the consequent crippling stress. But it serves no one's purpose to understand them as such. So, the prescription pad continues to prevail over lifestyle-change counselling or research.The struggle to achieve well-being and positive health, to ensure longevity, to combat lifestyle stress and professional burnout, and to reduce psychosomatic ailments continues unabated, with hardly an end in sight.WE THUS REALISE THAT MORBIDITY, DISABILITY, AND DEATH ASSAIL ALL THREE SOCIETIES: the ones with infectious diseases, the ones with diseases of poverty, and the ones with lifestyle diseases. If it is bacteria in their various forms that are the culprit in infectious diseases, it is poverty/deprivation in its various manifestations that is the culprit in poverty-related diseases, and it is lifestyle stress in its various avatars that is the culprit in lifestyle diseases. It is as though poverty and lifestyle stress have become the modern "bacteria" of developing and developed societies, respectively.For those societies afflicted with diseases of poverty, of course, the prime concern is to escape from the deadly grip of poverty-disease-deprivation-helplessness; but, while so doing, they must be careful not to land in the lap of lifestyle diseases. For the haves, the need is to seek well-being, positive health, and inner rootedness; to ask science not only to give them new pills for new ills, but to define and study how negative emotions hamper health and how positive ones promote it; to find out what is inner peace, what is the connection between spirituality and health, what is well-being, what is self-actualisation, what prevents disease, what leads to longevity, how simplicity impacts health, what attitudes help cope with chronic sicknesses, how sicknesses can be reversed (not just treated), etc. Studies on well-being, longevity, and simplicity need the concerted attention of researchers.THE TASK AHEAD IS CUT OUT FOR EACH ONE OF US: physician, patient, caregiver, biomedical researcher, writer/journalist, science administrator, policy maker, ethicist, man of religion, practitioner of alternate/complementary medicine, citizen of a world community, etc. Each one must do his or her bit to ensure freedom from disease and achieve well-being.Those in the developed world have the means to make life meaningful but, often, have lost the meaning of life itself; those in the developing world are fighting for survival but, often, have recipes to make life meaningful. This is especially true of a society like India, which is rapidly emerging from its underdeveloped status. It is an ancient civilization, with a philosophical outlook based on a robust mix of the temporal and the spiritual, with vibrant indigenous biomedical and related disciplines, for example, Ayurveda, Yoga, etc. It also has a burgeoning corpus of modern biomedical knowledge in active conversation with the rest of the world. It should be especially careful that, while it does not negate the fruits of economic development and scientific/biomedical advance that seem to beckon it in this century, it does not also forget the values that have added meaning and purpose to life; values that the ancients bequeathed it, drawn from their experiential knowledge down the centuries.The means that the developed have could combine with the recipes to make them meaningful that the developing have. That is the challenge ahead for mankind as it gropes its way out of poverty, disease, despair, alienation, anomie, and the ubiquitous all-devouring lifestyle stresses, and takes halting steps towards well-being and the glory of human development.

  9. Diseases of Poverty and Lifestyle, Well-Being and Human Development

    PubMed Central

    Singh, Ajai R.; Singh, Shakuntala A.

    2008-01-01

    The problems of the haves differ substantially from those of the have-nots. Individuals in developing societies have to fight mainly against infectious and communicable diseases, while in the developed world the battles are mainly against lifestyle diseases. Yet, at a very fundamental level, the problems are the same-the fight is against distress, disability, and premature death; against human exploitation and for human development and self-actualisation; against the callousness to critical concerns in regimes and scientific power centres. While there has been great progress in the treatment of individual diseases, human pathology continues to increase. Sicknesses are not decreasing in number, they are only changing in type. The primary diseases of poverty like TB, malaria, and HIV/AIDS-and the often co-morbid and ubiquitous malnutrition-take their toll on helpless populations in developing countries. Poverty is not just income deprivation but capability deprivation and optimism deprivation as well. While life expectancy may have increased in the haves, and infant and maternal mortality reduced, these gains have not necessarily ensured that well-being results. There are ever-multiplying numbers of individuals whose well-being is compromised due to lifestyle diseases. These diseases are the result of faulty lifestyles and the consequent crippling stress. But it serves no one's purpose to understand them as such. So, the prescription pad continues to prevail over lifestyle-change counselling or research. The struggle to achieve well-being and positive health, to ensure longevity, to combat lifestyle stress and professional burnout, and to reduce psychosomatic ailments continues unabated, with hardly an end in sight. We thus realise that morbidity, disability, and death assail all three societies: the ones with infectious diseases, the ones with diseases of poverty, and the ones with lifestyle diseases. If it is bacteria in their various forms that are the culprit in infectious diseases, it is poverty/deprivation in its various manifestations that is the culprit in poverty-related diseases, and it is lifestyle stress in its various avatars that is the culprit in lifestyle diseases. It is as though poverty and lifestyle stress have become the modern “bacteria” of developing and developed societies, respectively. For those societies afflicted with diseases of poverty, of course, the prime concern is to escape from the deadly grip of poverty-disease-deprivation-helplessness; but, while so doing, they must be careful not to land in the lap of lifestyle diseases. For the haves, the need is to seek well-being, positive health, and inner rootedness; to ask science not only to give them new pills for new ills, but to define and study how negative emotions hamper health and how positive ones promote it; to find out what is inner peace, what is the connection between spirituality and health, what is well-being, what is self-actualisation, what prevents disease, what leads to longevity, how simplicity impacts health, what attitudes help cope with chronic sicknesses, how sicknesses can be reversed (not just treated), etc. Studies on well-being, longevity, and simplicity need the concerted attention of researchers. The task ahead is cut out for each one of us: physician, patient, caregiver, biomedical researcher, writer/journalist, science administrator, policy maker, ethicist, man of religion, practitioner of alternate/complementary medicine, citizen of a world community, etc. Each one must do his or her bit to ensure freedom from disease and achieve well-being. Those in the developed world have the means to make life meaningful but, often, have lost the meaning of life itself; those in the developing world are fighting for survival but, often, have recipes to make life meaningful. This is especially true of a society like India, which is rapidly emerging from its underdeveloped status. It is an ancient civilization, with a philosophical outlook based on a robust mix of the temporal and the spiritual, with vibrant indigenous biomedical and related disciplines, for example, Ayurveda, Yoga, etc. It also has a burgeoning corpus of modern biomedical knowledge in active conversation with the rest of the world. It should be especially careful that, while it does not negate the fruits of economic development and scientific/biomedical advance that seem to beckon it in this century, it does not also forget the values that have added meaning and purpose to life; values that the ancients bequeathed it, drawn from their experiential knowledge down the centuries. The means that the developed have could combine with the recipes to make them meaningful that the developing have. That is the challenge ahead for mankind as it gropes its way out of poverty, disease, despair, alienation, anomie, and the ubiquitous all-devouring lifestyle stresses, and takes halting steps towards well-being and the glory of human development. PMID:22013359

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