Geneticizing Ethnicity and Diet: Anti-doping Science and Its Social Impact in the Age of Post-genomics

PubMed Central

Hyun, Jaehwan

2017-01-01

While gene doping and other technological means of sport enhancement have become a topic of ethical debate, a major outcome from genomic research in sports is often linked to the regulation of doping. In particular, researchers within the field of anti-doping science, a regulatory science that aims to develop scientific solutions for regulating doped athletes, have conducted genomic research on anabolic-androgenic steroids. Genomic knowledge on anabolic-androgenic steroids, a knowledge base that has been produced to improve doping regulation, has caused the ‘geneticization’ of cultural objects such as ethnic identities and dietary habits. Through examining how anti-doping genomic knowledge and its media representation unnecessarily reify cultural objects in terms of genomics, I argue that Ethical, Legal, and Social Implications (ELSI) research programs in human enhancement should include the social impacts of anti-doping science in their discussions. Furthermore, this article will propose that ELSI scholars begin their academic analysis on anti-doping science by engaging with the recent ELSI scholarship on genomics and race and consider the regulatory and political natures of anti-doping research. PMID:28536601

Downsizing genomic medicine: approaching the ethical complexity of whole-genome sequencing by starting small.

PubMed

Sharp, Richard R

2011-03-01

As we look to a time when whole-genome sequencing is integrated into patient care, it is possible to anticipate a number of ethical challenges that will need to be addressed. The most intractable of these concern informed consent and the responsible management of very large amounts of genetic information. Given the range of possible findings, it remains unclear to what extent it will be possible to obtain meaningful patient consent to genomic testing. Equally unclear is how clinicians will disseminate the enormous volume of genetic information produced by whole-genome sequencing. Toward developing practical strategies for managing these ethical challenges, we propose a research agenda that approaches multiplexed forms of clinical genetic testing as natural laboratories in which to develop best practices for managing the ethical complexities of genomic medicine.

Genomic cloud computing: legal and ethical points to consider

PubMed Central

Dove, Edward S; Joly, Yann; Tassé, Anne-Marie; Burton, Paul; Chisholm, Rex; Fortier, Isabel; Goodwin, Pat; Harris, Jennifer; Hveem, Kristian; Kaye, Jane; Kent, Alistair; Knoppers, Bartha Maria; Lindpaintner, Klaus; Little, Julian; Riegman, Peter; Ripatti, Samuli; Stolk, Ronald; Bobrow, Martin; Cambon-Thomsen, Anne; Dressler, Lynn; Joly, Yann; Kato, Kazuto; Knoppers, Bartha Maria; Rodriguez, Laura Lyman; McPherson, Treasa; Nicolás, Pilar; Ouellette, Francis; Romeo-Casabona, Carlos; Sarin, Rajiv; Wallace, Susan; Wiesner, Georgia; Wilson, Julia; Zeps, Nikolajs; Simkevitz, Howard; De Rienzo, Assunta; Knoppers, Bartha M

2015-01-01

The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Researchers are increasingly turning to cloud computing both as a solution to integrate data from genomics, systems biology and biomedical data mining and as an approach to analyze data to solve biomedical problems. Although cloud computing provides several benefits such as lower costs and greater efficiency, it also raises legal and ethical issues. In this article, we discuss three key ‘points to consider' (data control; data security, confidentiality and transfer; and accountability) based on a preliminary review of several publicly available cloud service providers' Terms of Service. These ‘points to consider' should be borne in mind by genomic research organizations when negotiating legal arrangements to store genomic data on a large commercial cloud service provider's servers. Diligent genomic cloud computing means leveraging security standards and evaluation processes as a means to protect data and entails many of the same good practices that researchers should always consider in securing their local infrastructure. PMID:25248396

Genomic cloud computing: legal and ethical points to consider.

PubMed

Dove, Edward S; Joly, Yann; Tassé, Anne-Marie; Knoppers, Bartha M

2015-10-01

The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Researchers are increasingly turning to cloud computing both as a solution to integrate data from genomics, systems biology and biomedical data mining and as an approach to analyze data to solve biomedical problems. Although cloud computing provides several benefits such as lower costs and greater efficiency, it also raises legal and ethical issues. In this article, we discuss three key 'points to consider' (data control; data security, confidentiality and transfer; and accountability) based on a preliminary review of several publicly available cloud service providers' Terms of Service. These 'points to consider' should be borne in mind by genomic research organizations when negotiating legal arrangements to store genomic data on a large commercial cloud service provider's servers. Diligent genomic cloud computing means leveraging security standards and evaluation processes as a means to protect data and entails many of the same good practices that researchers should always consider in securing their local infrastructure.

[Science and ethics].

PubMed

Harrer, Friedrich

2002-01-01

In current ethics debates, the protection of animals and the environment are central themes. In this context, reference is made to "ethics of responsibility". In the reality of scientific life and the conduct of science, "ethics of responsibility" have only had a modest impact. Reflection based on the history of thought may explain this finding. Upon abolishing God, man has redirected an initially religious love and devotion toward himself. The postulate of unfettered dominion over the Earth has become the supreme principle. "Theoria" in the sense of its original meaning, that is a celebratory admiration for sacred Nature, is incomprehensible to modern man. Nature has been stripped of its sanctity and transformed into something to be exploited for its human utility. Consequently, today the credo applies that to interpret the freedom of science according to ethical principles is utterly untenable. The author pleads for reconsideration.

Ethical, legal, and social issues in the translation of genomics into health care.

PubMed

Badzek, Laurie; Henaghan, Mark; Turner, Martha; Monsen, Rita

2013-03-01

The rapid continuous feed of new information from scientific discoveries related to the human genome makes translation and incorporation of information into the clinical setting difficult and creates ethical, legal, and social challenges for providers. This article overviews some of the legal and ethical foundations that guide our response to current complex issues in health care associated with the impact of scientific discoveries related to the human genome. Overlapping ethical, legal, and social implications impact nurses and other healthcare professionals as they seek to identify and translate into practice important information related to new genomic scientific knowledge. Ethical and legal foundations such as professional codes, human dignity, and human rights provide the framework for understanding highly complex genomic issues. Ethical, legal, and social concerns of the health provider in the translation of genomic knowledge into practice including minimizing harms, maximizing benefits, transparency, confidentiality, and informed consent are described. Additionally, nursing professional competencies related to ethical, legal, and social issues in the translation of genomics into health care are discussed. Ethical, legal, and social considerations in new genomic discovery necessitate that healthcare professionals have knowledge and competence to respond to complex genomic issues and provide appropriate information and care to patients, families, and communities. Understanding the ethical, legal, and social issues in the translation of genomic information into practice is essential to provide patients, families, and communities with competent, safe, effective health care. © 2013 Sigma Theta Tau International.

Ethics in Science.

PubMed

Sharma, Om P

2015-09-01

Ethics are a set of moral principles and values a civilized society follows. Doing science with principles of ethics is the bedrock of scientific activity. The society trusts that the results and the projected outcome of any scientific activity is based on an honest and conscientious attempt by the scientific community. However, during the last few decades, there has been an explosion of knowledge and the advent of digital age. We can access the publications of competitors with just a "click". The evaluation parameters have evolved a lot and are based on impact factors, h-index and citations. There is a general feeling that the scientific community is under a lot of pressure for fulfilling the criteria for upward growth and even retention of the positions held. The noble profession of scientific research and academics has been marred by the temptation to falsify and fabricate data, plagiarism and other unethical practices. Broadly speaking, the breach of ethics involves: plagiarism, falsification of data, redundant (duplicate) publication, drawing far-fetched conclusions without hard data, for early publicity, gift authorship (receiving as well as giving), not giving sufficient attention and consideration to scholars and post-docs as per the norms, self promotion at the cost of team-members, treating colleagues (overall all juniors) in a feudal way and Machiavellianism (cunningness and duplicity in general conduct and push to positions of power and pelf). Misconduct in Indian academics and science is also under a lot of focus. It is important and urgent that science, engineering, and health departments and institutions in our country have in place systems for education and training in pursuit of science with ethics by sound and professional courses in Responsible Conduct of Research. All research and academic institution must have the Office of Ethics for information, guidelines, training and professional oversight of conduct of research with the ethos and ethics

Ethics in health sciences librarianship.

PubMed Central

Hurych, J M; Glenn, A C

1987-01-01

Against a background of discussion about drafting of an ethical code for librarians and a review of articles confronting ethical issues in librarianship, the authors surveyed the 150 institutional members of the Health Science Librarians of Illinois (HSLI) regarding their perceptions of ethical concerns. Among the issues addressed in the survey are library organization, personnel policies, and professional competency, along with the traditional concerns of professional versus personal values, privacy and confidentiality, access to materials, and materials selection criteria in a health sciences context. Based on a 60% response rate, survey results indicate widespread agreement on some issues and a conspicuous lack of consensus on others. Further research is suggested in order to assess the need for a separate ethical code for health sciences librarians. PMID:3450346

Known unknowns: building an ethics of uncertainty into genomic medicine.

PubMed

Newson, Ainsley J; Leonard, Samantha J; Hall, Alison; Gaff, Clara L

2016-09-01

Genomic testing has reached the point where, technically at least, it can be cheaper to undertake panel-, exome- or whole genome testing than it is to sequence a single gene. An attribute of these approaches is that information gleaned will often have uncertain significance. In addition to the challenges this presents for pre-test counseling and informed consent, a further consideration emerges over how - ethically - we should conceive of and respond to this uncertainty. To date, the ethical aspects of uncertainty in genomics have remained under-explored. In this paper, we draft a conceptual and ethical response to the question of how to conceive of and respond to uncertainty in genomic medicine. After introducing the problem, we articulate a concept of 'genomic uncertainty'. Drawing on this, together with exemplar clinical cases and related empirical literature, we then critique the presumption that uncertainty is always problematic and something to be avoided, or eradicated. We conclude by outlining an 'ethics of genomic uncertainty'; describing how we might handle uncertainty in genomic medicine. This involves fostering resilience, welfare, autonomy and solidarity. Uncertainty will be an inherent aspect of clinical practice in genomics for some time to come. Genomic testing should not be offered with the explicit aim to reduce uncertainty. Rather, uncertainty should be appraised, adapted to and communicated about as part of the process of offering and providing genomic information.

Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries.

PubMed

de Vries, Jantina; Munung, Syntia Nchangwi; Matimba, Alice; McCurdy, Sheryl; Ouwe Missi Oukem-Boyer, Odile; Staunton, Ciara; Yakubu, Aminu; Tindana, Paulina

2017-02-02

The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research based on sharing, causing confusion about what is allowed, where and when. In order to understand better the ethics regulatory landscape around genomic research and biobanking, we conducted a comprehensive analysis of existing ethics guidelines, policies and other similar sources. We sourced 30 ethics regulatory documents from 22 African countries. We used software that assists with qualitative data analysis to conduct a thematic analysis of these documents. Surprisingly considering how contentious broad consent is in Africa, we found that most countries allow the use of this consent model, with its use banned in only three of the countries we investigated. In a likely response to fears about exploitation, the export of samples outside of the continent is strictly regulated, sometimes in conjunction with regulations around international collaboration. We also found that whilst an essential and critical component of ensuring ethical best practice in genomics research relates to the governance framework that accompanies sample and data sharing, this was most sparingly covered in the guidelines. There is a need for ethics guidelines in African countries to be adapted to the changing science policy landscape, which increasingly supports principles of openness, storage, sharing and secondary use. Current guidelines are not pertinent to the ethical challenges that such a new orientation raises, and therefore fail to provide accurate guidance

Bridging the divide between genomic science and indigenous peoples.

PubMed

Jacobs, Bette; Roffenbender, Jason; Collmann, Jeff; Cherry, Kate; Bitsói, LeManuel Lee; Bassett, Kim; Evans, Charles H

2010-01-01

definition of "rigorous scientific research," one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples. © 2010 American Society of Law, Medicine & Ethics, Inc.

Basing Science Ethics on Respect for Human Dignity.

PubMed

Aközer, Mehmet; Aközer, Emel

2016-12-01

A "no ethics" principle has long been prevalent in science and has demotivated deliberation on scientific ethics. This paper argues the following: (1) An understanding of a scientific "ethos" based on actual "value preferences" and "value repugnances" prevalent in the scientific community permits and demands critical accounts of the "no ethics" principle in science. (2) The roots of this principle may be traced to a repugnance of human dignity, which was instilled at a historical breaking point in the interrelation between science and ethics. This breaking point involved granting science the exclusive mandate to pass judgment on the life worth living. (3) By contrast, respect for human dignity, in its Kantian definition as "the absolute inner worth of being human," should be adopted as the basis to ground science ethics. (4) The pathway from this foundation to the articulation of an ethical duty specific to scientific practice, i.e., respect for objective truth, is charted by Karl Popper's discussion of the ethical principles that form the basis of science. This also permits an integrated account of the "external" and "internal" ethical problems in science. (5) Principles of the respect for human dignity and the respect for objective truth are also safeguards of epistemic integrity. Plain defiance of human dignity by genetic determinism has compromised integrity of claims to knowledge in behavioral genetics and other behavioral sciences. Disregard of the ethical principles that form the basis of science threatens epistemic integrity.

Public trust and 'ethics review' as a commodity: the case of Genomics England Limited and the UK's 100,000 genomes project.

PubMed

Samuel, Gabrielle Natalie; Farsides, Bobbie

2018-06-01

The UK Chief Medical Officer's 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK's National Health Service (NHS). This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK's 100,000 Genomes Project (100 kGP)-the catalyst for Generation Genome, and for bringing genomics into the NHS-is negotiating these ethical concerns. The UK's 100 kGP, promoted and delivered by Genomics England Limited (GEL), is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the importance of ethical governance and decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as 'ethical' entities do not necessarily reflect a space within which moral thinking occurs. Rather, the 'ethical work' conducted (and displayed) by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL's ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL.

Five-Year Bibliometric Review of Genomic Nursing Science Research.

PubMed

Williams, Janet K; Tripp-Reimer, Toni; Daack-Hirsch, Sandra; DeBerg, Jennifer

2016-03-01

This bibliometric review profiles the focus, dissemination, and impact of genomic nursing science articles from 2010 to 2014. Data-based genomic nursing articles by nursing authors and articles by non-nurse principal investigators funded by the National Institute of Nursing Research were categorized into the Genomic Nursing Science Blueprint nursing areas. Bibliometric content analysis was used. A total of 197 articles met the inclusion criteria. Of these, 60.3% were on biologic plausibility, 12.1% on client self-management, 11.1% on decision making or decision support, 8.1% on family, and 4.0% on communication, with the remaining 4.0% of articles focused on other topics. Few (11.6%) addressed healthcare disparities in the study purpose. Thirty-four references (17.2%) were cited 10 or more times. Research-based genomic nursing science articles are in the discovery phase of inquiry. All topics were investigated in more than one country. Healthcare disparities were addressed in few studies. Research findings from interdisciplinary teams were disseminated beyond nursing audiences, with findings addressing biologic discovery, decision making or support, and family being cited most frequently. Gaps in the reviewed articles included cross-cutting themes, ethics, and clinical utility. Interdisciplinary research is needed to document clinical and system outcomes of genomic nursing science implementation in health care. Although the review identifies areas that are encountered in clinical practice, relevance to practice will depend on evaluation of findings and subsequent development of clinical guidelines. © 2016 Sigma Theta Tau International.

Six Challenges for Ethical Conduct in Science.

PubMed

Niemi, Petteri

2016-08-01

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

The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: reflections on an ongoing experiment.

PubMed

McEwen, Jean E; Boyer, Joy T; Sun, Kathie Y; Rothenberg, Karen H; Lockhart, Nicole C; Guyer, Mark S

2014-01-01

For more than 20 years, the Ethical, Legal, and Social Implications (ELSI) Program of the National Human Genome Research Institute has supported empirical and conceptual research to anticipate and address the ethical, legal, and social implications of genomics. As a component of the agency that funds much of the underlying science, the program has always been an experiment. The ever-expanding number of issues the program addresses and the relatively low level of commitment on the part of other funding agencies to support such research make setting priorities especially challenging. Program-supported studies have had a significant impact on the conduct of genomics research, the implementation of genomic medicine, and broader public policies. The program's influence is likely to grow as ELSI research, genomics research, and policy development activities become increasingly integrated. Achieving the benefits of increased integration while preserving the autonomy, objectivity, and intellectual independence of ELSI investigators presents ongoing challenges and new opportunities.

The role of disease characteristics in the ethical debate on personal genome testing.

PubMed

Bunnik, Eline M; Schermer, Maartje Hn; Janssens, A Cecile J W

2012-01-19

Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests. In this paper, we identify and discuss four disease characteristics--severity, actionability, age of onset, and the somatic/psychiatric nature of disease--and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions. We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.

The role of ethics in science and engineering.

PubMed

Johnson, Deborah G

2010-12-01

It is generally thought that science and engineering should never cross certain ethical lines. The idea connects ethics to science and engineering, but it frames the relationship in a misleading way. Moral notions and practices inevitably influence and are influenced by science and engineering. The important question is how such interactions should take place. Anticipatory ethics is a new approach that integrates ethics into technological development. Copyright © 2010 Elsevier Ltd. All rights reserved.

The ethics of creating genetically modified children using genome editing.

PubMed

Ishii, Tetsuya

2017-12-01

To review the recent ethical, legal, and social issues surrounding human reproduction involving germline genome editing. Genome editing techniques, such as CRISPR/Cas9, have facilitated genetic modification in human embryos. The most likely purpose of germline genome editing is the prevention of serious genetic disease in offspring. However, complex issues still remain, including irremediable risks to fetuses and future generations, the role of women, the availability of alternatives, long-term follow-up, health insurance coverage, misuse for human enhancement, and the potential effects on adoption. Further discussions, a broad consensus, and appropriate regulations are required before human germline genome editing is introduced into the global society. Before germline genome editing is used for disease prevention, a broad consensus must be formed by carefully discussing its ethical, legal, and social issues.

Research on the human genome and patentability--the ethical consequences.

PubMed Central

Pompidou, A

1995-01-01

The genome is one of the primordial elements of the human being and is responsible for human identity and its transmission to descendants. The gene as such ought not be appropriated or owned by man. However, any sufficiently complete description of a gene should be capable of being protected as intellectual property. Furthermore, all utilisations of a gene or its elements that permit development of processes or new products should be patentable. Ethics, in the sense of moral action, should come into play from the very first stages of research into the human genome. Protection of intellectual and industrial property is of purely legal concern and need not provoke ethical consideration. By contrast, the use of the results of, and in particular the commercialisation of products deriving from, research into the human genome, ought to be subjected to ethical consideration and control. Considering the economic and societal stakes of such research, ethical analysis ought to be at an international level if mistakes and unforeseen risks of conflict are to be avoided. PMID:7608941

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.

Levinas and an Ethics for Science Education

ERIC Educational Resources Information Center

Blades, David W.

2006-01-01

Despite claims that STS(E) science education promotes ethical responsibility, this approach is not supported by a clear philosophy of ethics. This paper argues that the work of Emmanuel Levinas provides an ethics suitable for an STS(E) science education. His concept of the face of the Other redefines education as learning from the other, rather…

Virtue and the scientist: using virtue ethics to examine science's ethical and moral challenges.

PubMed

Chen, Jiin-Yu

2015-02-01

As science has grown in size and scope, it has also presented a number of ethical and moral challenges. Approaching these challenges from an ethical framework can provide guidance when engaging with them. In this article, I place science within a virtue ethics framework, as discussed by Aristotle. By framing science within virtue ethics, I discuss what virtue ethics entails for the practicing scientist. Virtue ethics holds that each person should work towards her conception of flourishing where the virtues enable her to realize that conception. The virtues must become part of the scientist's character, undergirding her intentions and motivations, as well as the resulting decisions and actions. The virtue of phronêsis, or practical wisdom, is critical for cultivating virtue, enabling the moral agent to discern the appropriate actions for a particular situation. In exercising phronêsis, the scientist considers the situation from multiple perspectives for an in-depth and nuanced understanding of the situation, discerns the relevant factors, and settles upon an appropriate decision. I examine goods internal to a practice, which are constitutive of science practiced well and discuss the role of phronêsis when grappling with science's ethical and moral features and how the scientist might exercise it. Although phronêsis is important for producing scientific knowledge, it is equally critical for working through the moral and ethical questions science poses.

The role of disease characteristics in the ethical debate on personal genome testing

PubMed Central

2012-01-01

Background Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests. Discussion In this paper, we identify and discuss four disease characteristics - severity, actionability, age of onset, and the somatic/psychiatric nature of disease - and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions. Summary We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing. PMID:22260407

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

PubMed

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

2012-01-01

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

Psychiatric Genomics and Mental Health Treatment: Setting the Ethical Agenda.

PubMed

Kong, Camillia; Dunn, Michael; Parker, Michael

2017-04-01

Realizing the benefits of translating psychiatric genomics research into mental health care is not straightforward. The translation process gives rise to ethical challenges that are distinctive from challenges posed within psychiatric genomics research itself, or that form part of the delivery of clinical psychiatric genetics services. This article outlines and considers three distinct ethical concerns posed by the process of translating genomic research into frontline psychiatric practice and policy making. First, the genetic essentialism that is commonly associated with the genomics revolution in health care might inadvertently exacerbate stigma towards people with mental disorders. Secondly, the promises of genomic medicine advance a narrative of individual empowerment. This narrative could promote a fatalism towards patients' biology in ways that function in practice to undermine patients' agency and autonomy, or, alternatively, a heightened sense of subjective genetic responsibility could become embedded within mental health services that leads to psychosocial therapeutic approaches and the clinician-patient therapeutic alliance being undermined. Finally, adopting a genomics-focused approach to public mental health risks shifting attention away from the complex causal relationships between inequitable socio-economic, political, and cultural structures and negative mental health outcomes. The article concludes by outlining a number of potential pathways for future ethics research that emphasizes the importance of examining appropriate translation mechanisms, the complementarity between genetic and psychosocial models of mental disorder, the implications of genomic information for the clinician-patient relationship, and funding priorities and resource allocation decision making in mental health.

Beyond the genome: The ethics of DNA testing

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

Fackelmann, K.A.

1994-11-05

This article looks at the implications of identification of specific genes in the human genome. Ethical questions concerning inherited conditions include privacy, paternity, judgement, society versus individual.

Data science ethics in government.

PubMed

Drew, Cat

2016-12-28

Data science can offer huge opportunities for government. With the ability to process larger and more complex datasets than ever before, it can provide better insights for policymakers and make services more tailored and efficient. As with all new technologies, there is a risk that we do not take up its opportunities and miss out on its enormous potential. We want people to feel confident to innovate with data. So, over the past 18 months, the Government Data Science Partnership has taken an open, evidence-based and user-centred approach to creating an ethical framework. It is a practical document that brings all the legal guidance together in one place, and is written in the context of new data science capabilities. As part of its development, we ran a public dialogue on data science ethics, including deliberative workshops, an experimental conjoint survey and an online engagement tool. The research supported the principles set out in the framework as well as provided useful insight into how we need to communicate about data science. It found that people had a low awareness of the term 'data science', but that showing data science examples can increase broad support for government exploring innovative uses of data. But people's support is highly context driven. People consider acceptability on a case-by-case basis, first thinking about the overall policy goals and likely intended outcome, and then weighing up privacy and unintended consequences. The ethical framework is a crucial start, but it does not solve all the challenges it highlights, particularly as technology is creating new challenges and opportunities every day. Continued research is needed into data minimization and anonymization, robust data models, algorithmic accountability, and transparency and data security. It also has revealed the need to set out a renewed deal between the citizen and state on data, to maintain and solidify trust in how we use people's data for social good.This article is part

Development and Implementation of Science and Technology Ethics Education Program for Prospective Science Teachers

NASA Astrophysics Data System (ADS)

Rhee, Hyang-yon; Choi, Kyunghee

2014-05-01

The purposes of this study were (1) to develop a science and technology (ST) ethics education program for prospective science teachers, (2) to examine the effect of the program on the perceptions of the participants, in terms of their ethics and education concerns, and (3) to evaluate the impact of the program design. The program utilized problem-based learning (PBL) which was performed as an iterative process during two cycles. A total of 23 and 29 prospective teachers in each cycle performed team activities. A PBL-based ST ethics education program for the science classroom setting was effective in enhancing participants' perceptions of ethics and education in ST. These perceptions motivated prospective science teachers to develop and implement ST ethics education in their future classrooms. The change in the prospective teachers' perceptions of ethical issues and the need for ethics education was greater when the topic was controversial.

The ‘thousand-dollar genome': an ethical exploration

PubMed Central

Dondorp, Wybo J; de Wert, Guido M W R

2013-01-01

Sequencing an individual's complete genome is expected to be possible for a relatively low sum ‘one thousand dollars' within a few years. Sequencing refers to determining the order of base pairs that make up the genome. The result is a library of three billion letter combinations. Cheap whole-genome sequencing is of greatest importance to medical scientific research. Comparing individual complete genomes will lead to a better understanding of the contribution genetic variation makes to health and disease. As knowledge increases, the ‘thousand-dollar genome' will also become increasingly important to healthcare. The applications that come within reach raise a number of ethical questions. This monitoring report addresses the issue. PMID:23677179

Science and ethics: Some issues for education

NASA Astrophysics Data System (ADS)

Andrew, Jennifer; Robottom, Ian

2001-11-01

Ethical issues concerning pain and suffering of animals are necessarily a consideration when it comes to killing pest or feral species in Australia. Within a continent where there are no large predators, many introduced animal species such as rabbits, foxes, horses, donkeys, camels, goats, and mice have been able to thrive, competing with the interests of farmers and graziers, and livestock and food production. These species, thus, gain the label of pest. Many methods now exist to kill these species and, consequently, ethical issues arise concerning the possible pain and suffering caused as a direct result of these methods. Yet within government and scientific communities, ethical issues are reduced to a secondary consideration without serious debate or contention. Ethical issues appear to be at odds with scientific agendas. How can environmental ethics be incorporated as part of science-based decision making that appeals to objectivity and scientific evidence? Within educational institutions as well, the same dilemma exists: How can ethical issues be addressed within the science curriculum and in the classroom? A greater understanding of various perspectives on the subject of environmental ethics and the value positions advocated by proponents of these perspectives may help teachers consider ways of handling such issues in the science classroom.

On teaching computer ethics within a computer science department.

PubMed

Quinn, Michael J

2006-04-01

The author has surveyed a quarter of the accredited undergraduate computer science programs in the United States. More than half of these programs offer a 'social and ethical implications of computing' course taught by a computer science faculty member, and there appears to be a trend toward teaching ethics classes within computer science departments. Although the decision to create an 'in house' computer ethics course may sometimes be a pragmatic response to pressure from the accreditation agency, this paper argues that teaching ethics within a computer science department can provide students and faculty members with numerous benefits. The paper lists topics that can be covered in a computer ethics course and offers some practical suggestions for making the course successful.

Teaching Ethical Issues in Science.

ERIC Educational Resources Information Center

Levinson, Ralph

This paper presents a study that investigates the teaching and learning aspects of controversial issues in science education. Teaching ethical issues is mandatory for science teachers in England; however, teachers may experience difficulties in exploring contemporary issues in science due to rapid and unpredictable changes. The study carries an…

Socioscience and ethics in science classrooms: Teacher perspectives and strategies

NASA Astrophysics Data System (ADS)

Sadler, Troy D.; Amirshokoohi, Aidin; Kazempour, Mahsa; Allspaw, Kathleen M.

2006-04-01

This study explored teacher perspectives on the use of socioscientific issues (SSI) and on dealing with ethics in the context of science instruction. Twenty-two middle and high school science teachers from three US states participated in semi-structured interviews, and researchers employed inductive analyses to explore emergent patterns relative to the following two questions. (1) How do science teachers conceptualize the place of ethics in science and science education? (2) How do science teachers handle topics with ethical implications and expression of their own values in their classrooms? Profiles were developed to capture the views and reported practices, relative to the place of ethics in science and science classrooms, of participants. Profile A comprising teachers who embraced the notion of infusing science curricula with SSI and cited examples of using controversial topics in their classes. Profile B participants supported SSI curricula in theory but reported significant constraints which prohibited them from actualizing these goals. Profile C described teachers who were non-committal with respect to focusing instruction on SSI and ethics. Profile D was based on the position that science and science education should be value-free. Profile E transcended the question of ethics in science education; these teachers felt very strongly that all education should contribute to their students' ethical development. Participants also expressed a wide range of perspectives regarding the expression of their own values in the classroom. Implications of this research for science education are discussed.

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

PubMed

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

2015-01-01

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

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.

From genetics to genomics: ethics, policy, and parental decision-making.

PubMed

Wilfond, Benjamin; Ross, Lainie Friedman

2009-07-01

Ethical evaluation of genetic testing in children is traditionally based on balancing clinical benefits and risks. However, this focus can be inconsistent with the general practice of respecting parental decision-making about their children's health care. We argue that respect for parental decision-making should play a larger role in shaping pediatric genetic testing practices, and play a similar role regarding decisions to use emerging genomic technologies. Genomic testing involves the examination of thousands of DNA markers spanning genes throughout the genome and their interrelationships, yielding virtually limitless interpretations. We presume that parents and providers should proceed cautiously in applying genomic testing in children, as we explore how genomic testing will stress the fault lines of the traditional ethical analysis. Empirical data about the psychosocial risks and benefits of genetic testing of children do not reveal serious harms, yet virtually no such data exist yet about genomic testing. Unless empirical social and behavioral data indicate that genomic testing is highly likely to cause serious harms to the children, parental decisions to obtain comprehensive genomic testing in their children should be respected. Once comprehensive genomic testing of children becomes routine, resultant information may be more easily integrated by families than anticipated. Research on the social and behavioral impact of comprehensive genomic testing on children and their families is needed to further inform parents, clinicians, and policy makers.

A Gendered Approach to Science Ethics for US and UK Physicists.

PubMed

Ecklund, Elaine Howard; Di, Di

2017-02-01

Some research indicates that women professionals-when compared to men-may be more ethical in the workplace. Existing literature that discusses gender and ethics is confined to the for-profit business sector and primarily to a US context. In particular, there is little attention paid to gender and ethics in science professions in a global context. This represents a significant gap, as science is a rapidly growing and global professional sector, as well as one with ethically ambiguous areas. Adopting an international comparative perspective, this paper relies on 121 semi-structured interviews with US and UK academic physicists to examine how physicists perceive the impact of gender on science ethics. Findings indicate that some US and UK physicists believe that female scientists handle ethical issues within science in a feminine way whereas their male colleagues approach ethics in a masculine way. Some of these physicists further claim that these different approaches to science ethics lead to male and female scientists' different levels of competitiveness in academic physics. In both the US and the UK, there are "gender-blind" physicists, who do not think gender is related to professional ethics. Relying on physicists' nuanced descriptions this paper contributes to the current understanding of gender and science and engineering ethics.

Invited review: Breeding and ethical perspectives on genetically modified and genome edited cattle.

PubMed

Eriksson, S; Jonas, E; Rydhmer, L; Röcklinsberg, H

2018-01-01

The hot topic of genetic modification and genome editing is sometimes presented as a rapid solution to various problems in the field of animal breeding and genetics. These technologies hold potential for future use in agriculture but we need to be aware of difficulties in large-scale application and integration in breeding schemes. In this review, we discuss applications of both classical genetic modifications (GM) using vectors and genome editing in dairy cattle breeding. We use an interdisciplinary approach considering both ethical and animal breeding perspectives. Decisions on how to make use of these techniques need to be made based not only on what is possible, but on what is reasonable to do. Principles of animal integrity, naturalness, risk perception, and animal welfare issues are examples of ethically relevant factors to consider. These factors also influence public perception and decisions about regulations by authorities. We need to acknowledge that we lack complete understanding of the genetic background of complex traits. It may be difficult, therefore, to predict the full effect of certain modifications in large-scale breeding programs. We present 2 potential applications: genome editing to dispense with dehorning, and insertion of human genes in bovine genomes to improve udder health as an example of classical GM. Both of these cases could be seen as beneficial for animal welfare but they differ in other aspects. In the former case, a genetic variant already present within the species is introduced, whereas in the latter case, transgenic animals are generated-this difference may influence how society regards the applications. We underline that the use of GM, as well as genome editing, of farm animals such as cattle is not independent of the context, and should be considered as part of an entire process, including, for example, the assisted reproduction technology that needs to be used. We propose that breeding organizations and breeding companies

Human Genome Editing and Ethical Considerations.

PubMed

Krishan, Kewal; Kanchan, Tanuj; Singh, Bahadur

2016-04-01

Editing human germline genes may act as boon in some genetic and other disorders. Recent editing of the genome of the human embryo with the CRISPR/Cas9 editing tool generated a debate amongst top scientists of the world for the ethical considerations regarding its effect on the future generations. It needs to be seen as to what transformation human gene editing brings to humankind in the times to come.

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

PubMed Central

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

2015-01-01

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

Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.

PubMed

Bredenoord, Annelien L; Mostert, Menno; Isasi, Rosario; Knoppers, Bartha M

2015-01-01

Data and sample sharing constitute a scientific and ethical imperative but need to be conducted in a responsible manner in order to protect individual interests as well as maintain public trust. In 2014, the Global Alliance for Genomics and Health (GA4GH) adopted a common Framework for Responsible Sharing of Genomic and Health-Related Data. The GA4GH Framework is applicable to data sharing in the stem cell field, however, interpretation is required so as to provide guidance for this specific context. In this paper, the International Stem Cell Forum Ethics Working Party discusses those principles that are specific to translational stem cell science, including engagement, data quality and safety, privacy, security and confidentiality, risk-benefit analysis and sustainability.

How a Deweyan science education further enables ethics education

NASA Astrophysics Data System (ADS)

Webster, Scott

2008-09-01

This paper questions the perceived divide between ‘science’ subject matter and ‘moral’ or ‘ethical’ subject matter. A difficulty that this assumed divide produces is that science teachers often feel that there needs to be ‘special treatment’ given to certain issues which are of an ethical or moral nature and which are ‘brought into’ the science class. The case is made in this article that dealing with ethical issues in the science class should not call for a sensitivity that is beyond the expertise of the science teacher. Indeed it is argued here that science teachers in particular have a great deal to offer in enabling ethics education. To overcome this perceived divide between science and values it needs to be recognised that the educative development of learners is both scientific and moral. I shall be using a Deweyan perspective to make the case that we as science teachers can overcome this apparent divide and significantly contribute to an ethics education of our students.

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.

Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.

PubMed

Wang, Shuang; Jiang, Xiaoqian; Singh, Siddharth; Marmor, Rebecca; Bonomi, Luca; Fox, Dov; Dow, Michelle; Ohno-Machado, Lucila

2017-01-01

Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype-phenotype linkage in biomedical research. © 2016 New York Academy of Sciences.

Genomics and Ethics: The Case of Cloned and/or Transgenic Animals

PubMed Central

2003-01-01

The point of the present study is to illustrate and, if possible, promote the existing link between genomics and ethics, taking the example of cloned and transgenic animals. These ‘new animals’ raise theoretical and practical problems that concern applied ethics. We will explore more particularly an original strategy showing that it is possible, starting from philosophical questioning about the nature of identity, to use a genomic approach, based on amplification fragment length polymorphism (AFLP) and methylation-sensitive amplification polymorphism (MSAP) detection, to provide useful tools to define more rigorously what cloned animals are, by testing their genetic and epigenetic identity. We expect from the future results of this combined approach to stimulate the creativity of the philosophical and ethical reflection about the impact of biotechnology on animals, and to increase scientific involvement in such issues. PMID:18629111

Science, human nature, and a new paradigm for ethics education.

PubMed

Lampe, Marc

2012-09-01

For centuries, religion and philosophy have been the primary basis for efforts to guide humans to be more ethical. However, training in ethics and religion and imparting positive values and morality tests such as those emanating from the categorical imperative and the Golden Rule have not been enough to protect humankind from its bad behaviors. To improve ethics education educators must better understand aspects of human nature such as those that lead to "self-deception" and "personal bias." Through rationalizations, faulty reasoning and hidden bias, individuals trick themselves into believing there is little wrong with their own unethical behavior. The application of science to human nature offers the possibility of improving ethics education through better self-knowledge. The author recommends a new paradigm for ethics education in contemporary modern society. This includes the creation of a new field called "applied evolutionary neuro-ethics" which integrates science and social sciences to improve ethics education. The paradigm can merge traditional thinking about ethics from religious and philosophical perspectives with new ideas from applied evolutionary neuro-ethics.

A decision tool to guide the ethics review of a challenging breed of emerging genomic projects.

PubMed

Joly, Yann; So, Derek; Osien, Gladys; Crimi, Laura; Bobrow, Martin; Chalmers, Don; Wallace, Susan E; Zeps, Nikolajs; Knoppers, Bartha

2016-08-01

Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science. As few ethics review policies take these changes into account, it is often difficult to determine the appropriate level of review. Mislabeling can result in unnecessary burdens for the investigators or, conversely, in underestimation of the risks to participants. Therefore, it is important to develop a consistent method of selecting the review process for genomics and bioinformatics projects. This paper begins by discussing two case studies from the ICGC, followed by a literature review on the distinction between QA and research and a comparative analysis of ethics review policies from Canada, the United States, the United Kingdom, and Australia. These results are synthesized into a novel two-step decision tool for researchers and policymakers, which uses traditional criteria to sort clearly defined activities while requiring the use of actual risk levels to decide more complex cases.

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

PubMed

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

2016-09-27

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

An Ethically Ambitious Higher Education Data Science

ERIC Educational Resources Information Center

Stevens, Mitchell L.

2014-01-01

The new data sciences of education bring substantial legal, political, and ethical questions about the management of information about learners. This piece provides a synoptic view of recent scholarly discussion in this domain and calls for a proactive approach to the ethics of learning research.

Cautionary Tales: Ethics and Case Studies in Science

PubMed Central

Herreid, Clyde Freeman

2014-01-01

Ethical concerns are normally avoided in science classrooms in spite of the fact that many of our discoveries impinge directly on personal and societal values. We should not leave the ethical problems for another day, but deal with them using realistic case studies that challenge students at their ethical core. In this article we illustrate how case studies can be used to teach STEM students principles of ethics. PMID:25574280

The Ethical Challenges of Socially Responsible Science

PubMed Central

Resnik, David B.; Elliott, Kevin C.

2015-01-01

Social responsibility is an essential part of the responsible conduct of research that presents difficult ethical questions for scientists. Recognizing one’s social responsibilities as a scientist is an important first step toward exercising social responsibility, but it is only the beginning, since scientists may confront difficult value questions when deciding how to act responsibly. Ethical dilemmas related to socially responsible science fall into at least three basic categories: 1) dilemmas related to problem selection, 2) dilemmas related to publication and data sharing, and 3) dilemmas related to engaging society. In responding to these dilemmas, scientists must decide how to balance their social responsibilities against other professional commitments and how to avoid compromising their objectivity. In this article, we will examine the philosophical and ethical basis of social responsibility in science, discuss some of the ethical dilemmas related to exercising social responsibility, and make five recommendations to help scientists deal with these issues. PMID:26193168

The Ethical Challenges of Socially Responsible Science.

PubMed

Resnik, David B; Elliott, Kevin C

2016-01-01

Social responsibility is an essential part of the responsible conduct of research that presents difficult ethical questions for scientists. Recognizing one's social responsibilities as a scientist is an important first step toward exercising social responsibility, but it is only the beginning, since scientists may confront difficult value questions when deciding how to act responsibly. Ethical dilemmas related to socially responsible science fall into at least three basic categories: 1) dilemmas related to problem selection, 2) dilemmas related to publication and data sharing, and 3) dilemmas related to engaging society. In responding to these dilemmas, scientists must decide how to balance their social responsibilities against other professional commitments and how to avoid compromising their objectivity. In this article, we will examine the philosophical and ethical basis of social responsibility in science, discuss some of the ethical dilemmas related to exercising social responsibility, and make five recommendations to help scientists deal with these issues.

Teaching science and ethics to undergraduates: a multidisciplinary approach.

PubMed

McGowan, Alan H

2013-06-01

The teaching of the ethical implications of scientific advances in science courses for undergraduates has significant advantages for both science and non-science majors. The article describes three courses taught by the author as examples of the concept, and examines the disadvantages as well as the advantages. A significant advantage of this approach is that many students take the courses primarily because of the ethical component who would not otherwise take science. A disadvantage is less time in the course for the science; arguably, this is outweighed by the greater retention of the science when it is put into context.

Ethical and Legal Issues in Biobanking for Genomic Research in Nigeria

PubMed Central

Akintola, Simisola. O.

2013-01-01

The pursuit of genomic research and biobanking has raised concerns and discussions about the ethical and legal implications. Given the specific challenges that surround such enterprise in low and middle income countries, it is pertinent to examine them in the light of the advent of Biobanking and Genomic research in Nigeria. In this paper I discuss the issues and suggest model solutions derived from advanced jurisdictions. These ethical and legal issues are discussed within the context of the legal system of a typical African country whose jurisprudence derives from that of its erstwhile colonial master, the United Kingdom. This includes issues relating to law and human rights, informed consent, native and customary law. PMID:24353984

How a Deweyan Science Education Further Enables Ethics Education

ERIC Educational Resources Information Center

Webster, Scott

2008-01-01

This paper questions the perceived divide between "science" subject matter and "moral" or "ethical" subject matter. A difficulty that this assumed divide produces is that science teachers often feel that there needs to be "special treatment" given to certain issues which are of an ethical or moral nature and which are "brought into" the science…

SciEthics Interactive: Science and Ethics Learning in a Virtual Environment

ERIC Educational Resources Information Center

Nadolny, Larysa; Woolfrey, Joan; Pierlott, Matthew; Kahn, Seth

2013-01-01

Learning in immersive 3D environments allows students to collaborate, build, and interact with difficult course concepts. This case study examines the design and development of the TransGen Island within the SciEthics Interactive project, a National Science Foundation-funded, 3D virtual world emphasizing learning science content in the context of…

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

PubMed

Desclaux, A

2008-04-01

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

The ethical introduction of genome-based information and technologies into public health.

PubMed

Howard, H C; Swinnen, E; Douw, K; Vondeling, H; Cassiman, J-J; Cambon-Thomsen, A; Borry, P

2013-01-01

With the human genome project running from 1989 until its completion in 2003, and the incredible advances in sequencing technology and in bioinformatics during the last decade, there has been a shift towards an increase focus on studying common complex disorders which develop due to the interplay of many different genes as well as environmental factors. Although some susceptibility genes have been identified in some populations for disorders such as cancer, diabetes and cardiovascular diseases, the integration of this information into the health care system has proven to be much more problematic than for single gene disorders. Furthermore, with the 1000$ genome supposedly just around the corner, and whole genome sequencing gradually being integrated into research protocols as well as in the clinical context, there is a strong push for the uptake of additional genomic testing. Indeed, the advent of public health genomics, wherein genomics would be integrated in all aspects of health care and public health, should be taken seriously. Although laudable, these advances also bring with them a slew of ethical and social issues that challenge the normative frameworks used in clinical genetics until now. With this in mind, we highlight herein 5 principles that are used as a primer to discuss the ethical introduction of genome-based information and genome-based technologies into public health. Copyright © 2013 S. Karger AG, Basel.

Field and Experience Influences on Ethical Decision-Making in the Sciences

PubMed Central

Mumford, Michael D.; Connelly, Shane; Murphy, Stephen T.; Devenport, Lynn D.; Antes, Alison L.; Brown, Ryan P.; Hill, Jason H.; Waples, Ethan P.

2009-01-01

Differences across fields and experience levels are frequently considered in discussions of ethical decision-making and ethical behavior. In the present study, doctoral students in the health, biological, and social sciences completed measures of ethical decision-making. The effects of field and level of experience with respect to ethical decision-making, metacognitive reasoning strategies, social-behavioral responses, and exposure to unethical events were examined. Social and biological scientists performed better than health scientists with respect to ethical decision-making. Furthermore, the ethical decision-making of health science students decreased as experience increased. Moreover, these effects appeared to be linked to the specific strategies underlying participants' ethical decision-making. The implications of these findings for ethical decision-making are discussed. PMID:19750129

A blueprint for genomic nursing science.

PubMed

Calzone, Kathleen A; Jenkins, Jean; Bakos, Alexis D; Cashion, Ann K; Donaldson, Nancy; Feero, W Gregory; Feetham, Suzanne; Grady, Patricia A; Hinshaw, Ada Sue; Knebel, Ann R; Robinson, Nellie; Ropka, Mary E; Seibert, Diane; Stevens, Kathleen R; Tully, Lois A; Webb, Jo Ann

2013-03-01

This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the federal government. This genomic nursing science

A Blueprint for Genomic Nursing Science

PubMed Central

Calzone, Kathleen A.; Jenkins, Jean; Bakos, Alexis D.; Cashion, Ann; Donaldson, Nancy; Feero, Greg; Feetham, Suzanne; Grady, Patricia A.; Hinshaw, Ada Sue; Knebel, Ann R.; Robinson, Nellie; Ropka, Mary E.; Seibert, Diane; Stevens, Kathleen R.; Tully, Lois A.; Webb, Jo Ann

2012-01-01

Purpose This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. Organizing Constructs A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. Findings The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. Conclusions The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the

Development and Implementation of Science and Technology Ethics Education Program for Prospective Science Teachers

ERIC Educational Resources Information Center

Rhee, Hyang-yon; Choi, Kyunghee

2014-01-01

The purposes of this study were (1) to develop a science and technology (ST) ethics education program for prospective science teachers, (2) to examine the effect of the program on the perceptions of the participants, in terms of their ethics and education concerns, and (3) to evaluate the impact of the program design. The program utilized…

A quantitative perspective on ethics in large team science.

PubMed

Petersen, Alexander M; Pavlidis, Ioannis; Semendeferi, Ioanna

2014-12-01

The gradual crowding out of singleton and small team science by large team endeavors is challenging key features of research culture. It is therefore important for the future of scientific practice to reflect upon the individual scientist's ethical responsibilities within teams. To facilitate this reflection we show labor force trends in the US revealing a skewed growth in academic ranks and increased levels of competition for promotion within the system; we analyze teaming trends across disciplines and national borders demonstrating why it is becoming difficult to distribute credit and to avoid conflicts of interest; and we use more than a century of Nobel prize data to show how science is outgrowing its old institutions of singleton awards. Of particular concern within the large team environment is the weakening of the mentor-mentee relation, which undermines the cultivation of virtue ethics across scientific generations. These trends and emerging organizational complexities call for a universal set of behavioral norms that transcend team heterogeneity and hierarchy. To this end, our expository analysis provides a survey of ethical issues in team settings to inform science ethics education and science policy.

Neurogenethics: An emerging discipline at the intersection of ethics, neuroscience, and genomics.

PubMed

Canli, Turhan

2015-06-01

The analysis of ethical, legal, and social implications (ELSI) associated with genetics ("genethics") has focused on traditional concerns in bioethics, such as privacy and informed consent. The analysis of ELSI associated with neuroscience ("neuroethics") has focused on concerns related to personhood, such as free will or cognitive enhancement. With neurogenomics coming of age, this is an appropriate time to attend to the set of novel concerns that arises when we consider the confluence of these two lines of research. I call this area of ethics inquiry "neurogenethics", map out the problem space, and highlight future areas of inquiry related to genome editing and gene therapy, optogenetics and memory manipulation, and genomic identity and online communities.

Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States

PubMed Central

Wang, Shuang; Jiang, Xiaoqian; Singh, Siddharth; Marmor, Rebecca; Bonomi, Luca; Fox, Dov; Dow, Michelle; Ohno-Machado, Lucila

2016-01-01

Accessing and integrating human genomic data with phenotypes is important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype–phenotype linkage in biomedical research. PMID:27681358

Fieldwork and social science research ethics.

PubMed

Contractor, Qudsiya

2008-01-01

Fieldwork as a part of social science research brings the researcher closest to the subject of research. It is a dynamic process where there is an exchange between the researcher, participants, stakeholders, gatekeepers, the community and the larger sociopolitical context in which the research problem is located. Ethical dilemmas that surface during fieldwork often pose a unique challenge to the researcher. This paper is based on field experiences during an action research study conducted with a human rights perspective. It discusses the role conflict that researchers face during fieldwork in a situation of humanitarian crisis. It raises issues pertaining to the need to extend the ethical decision-making paradigm to address ethical dilemmas arising during the course of fieldwork.

The ethics of smart cities and urban science.

PubMed

Kitchin, Rob

2016-12-28

Software-enabled technologies and urban big data have become essential to the functioning of cities. Consequently, urban operational governance and city services are becoming highly responsive to a form of data-driven urbanism that is the key mode of production for smart cities. At the heart of data-driven urbanism is a computational understanding of city systems that reduces urban life to logic and calculative rules and procedures, which is underpinned by an instrumental rationality and realist epistemology. This rationality and epistemology are informed by and sustains urban science and urban informatics, which seek to make cities more knowable and controllable. This paper examines the forms, practices and ethics of smart cities and urban science, paying particular attention to: instrumental rationality and realist epistemology; privacy, datafication, dataveillance and geosurveillance; and data uses, such as social sorting and anticipatory governance. It argues that smart city initiatives and urban science need to be re-cast in three ways: a re-orientation in how cities are conceived; a reconfiguring of the underlying epistemology to openly recognize the contingent and relational nature of urban systems, processes and science; and the adoption of ethical principles designed to realize benefits of smart cities and urban science while reducing pernicious effects.This article is part of the themed issue 'The ethical impact of data science'. © 2016 The Author(s).

Human genome and open source: balancing ethics and business.

PubMed

Marturano, Antonio

2011-01-01

The Human Genome Project has been completed thanks to a massive use of computer techniques, as well as the adoption of the open-source business and research model by the scientists involved. This model won over the proprietary model and allowed a quick propagation and feedback of research results among peers. In this paper, the author will analyse some ethical and legal issues emerging by the use of such computer model in the Human Genome property rights. The author will argue that the Open Source is the best business model, as it is able to balance business and human rights perspectives.

ETHICS AND JUSTICE IN ENVIRONMENTAL SCIENCE AND ENGINEERING

EPA Science Inventory

Science and engineering are built on trust. C.P. Snow's famous quote, "the only ethical principle which has made science possible is that the truth shall be told all the time" underscores the importance of honesty in science. Environmental scientists must do work that is useful...

Hunter-gatherer genomics: Evolutionary insights and ethical considerations

PubMed Central

Bankoff, Richard J.; Perry, George H.

2016-01-01

Hunting and gathering societies currently comprise only a small proportion of all human populations. However, the geographic and environmental diversity of modern hunter-gatherer groups, their inherent dependence on ecological resources, and their connection to patterns of behavior and subsistence that represent the vast majority of human history provide opportunities for scientific research to deliver major insights into the evolutionary history of our species. We review recent evolutionary genomic studies of hunter-gatherers, focusing especially on those that identify and functionally characterize phenotypic adaptations to local environments. We also call attention to specific ethical issues that scientists conducting hunter-gatherer genomics research ought to consider, including potential social and economic tensions between traditionally mobile hunter-gatherers and the land ownership-based nation-states by which they are governed, and the implications of genomic-based evidence of long-term evolutionary associations with particular habitats. PMID:27400119

Contesting the science/ethics distinction in the review of clinical research

PubMed Central

Dawson, Angus J; Yentis, Steve M

2007-01-01

Recent policy in relation to clinical research proposals in the UK has distinguished between two types of review: scientific and ethical. This distinction has been formally enshrined in the recent changes to research ethics committee (REC) structure and operating procedures, introduced as the UK response to the EU Directive on clinical trials. Recent reviews and recommendations have confirmed the place of the distinction and the separate review processes. However, serious reservations can be mounted about the science/ethics distinction and the policy of separate review that has been built upon it. We argue here that, first, the science/ethics distinction is incoherent, and, second, that RECs should not only be permitted to consider a study's science, but that they have anobligation do so. PMID:17329389

In search of the soul in science: medical ethics' appropriation of philosophy of science in the 1970s.

PubMed

Aronova, Elena

2009-01-01

This paper examines the deployment of science studies within the field of medical ethics. For a short time, the discourse of medical ethics became a fertile ground for a dialogue between philosophically minded bioethicists and the philosophers of science who responded to Thomas Kuhn's challenge. In their discussion of the validity of Kuhn's work, these bioethicists suggested a distinct interpretation of Kuhn, emphasizing the elements in his account that had been independently developed by Michael Polanyi, and propelling a view of science that retreated from idealizations of scientific method without sacrificing philosophical realism. Appropriating Polanyi, they extended his account of science to biology and medicine. The contribution of Karl Popper to the debate on the applicability of philosophy of science to the issues of medical ethics provides the opportunity to discuss the ways in which political agendas of different epistemologies of science intertwined with questions of concern to medical ethics.

Research ethics in the post-genomic era.

PubMed

Vähäkangas, Kirsi

2013-08-01

New high-throughput 'omics techniques are providing exciting opportunities in clinical medicine and toxicology, especially in the development of biomarkers. In health science research there are traditional ethical considerations that are reasonably obvious, like balancing health benefits and health risks, autonomy mainly pursued by informed consent, and protecting privacy. Epidemiological studies applying new large-scale approaches (e.g., high-throughput or high-content methods and global studies that utilize biobanking of samples and produce large-scale datasets) present new challenges that call for re-evaluation of standard ethical considerations. In this context, assessment of the ethics underlying study designs, bioinformatics, and statistics applied in the generation and clinical translation of research results should also be considered. Indeed, there are ethical considerations in the research process itself, in research objectives and how research is pursued (e.g., which methodologies are selected and how they are carried out). Maintaining research integrity is critical, as demonstrated by the relatively frequent retraction of scientific papers following violations of good scientific practice. Abiding by the laws is necessary but not sufficient for good research ethics, which is and remains in the hands of the scientific community at the level of both individual scientists and organizations. Senior scientists are responsible for the transfer of research tradition to the next generation of scientists through education, mentorship, and setting an example by their own behavior, as well as by creating systems in institutions that support good research ethics. Copyright © 2013 Wiley Periodicals, Inc.

Teaching Research Ethics Better: Focus on Excellent Science, Not Bad Scientists

PubMed Central

Hunter, Lawrence

2013-01-01

Abstract A recent report of the United States’ Presidential Commission for the Study of Bioethical Issues highlights how important it is for the research community to enjoy the “earned confidence” of the public and how creating a “culture of responsibility” can contribute to that confidence. It identifies a major role for “creative, flexible, and innovative” ethics education in creating such a culture. Other recent governmental reports from various nations similarly call for a renewed emphasis on ethics education in the sciences. We discuss why some common approaches to ethics education in the graduate sciences fail to meet the goals envisioned in the reports and we describe an approach, animated by primary attention on excellent science as opposed to bad scientists, that we have employed in our ethics teaching that we think is better suited for inspiring and sustaining responsible, trustworthy science. PMID:23751025

Teaching research ethics better: focus on excellent science, not bad scientists.

PubMed

Yarborough, Mark; Hunter, Lawrence

2013-06-01

A recent report of the United States' Presidential Commission for the Study of Bioethical Issues highlights how important it is for the research community to enjoy the "earned confidence" of the public and how creating a "culture of responsibility" can contribute to that confidence. It identifies a major role for "creative, flexible, and innovative" ethics education in creating such a culture. Other recent governmental reports from various nations similarly call for a renewed emphasis on ethics education in the sciences. We discuss why some common approaches to ethics education in the graduate sciences fail to meet the goals envisioned in the reports and we describe an approach, animated by primary attention on excellent science as opposed to bad scientists, that we have employed in our ethics teaching that we think is better suited for inspiring and sustaining responsible, trustworthy science. © 2013 Wiley Periodicals, Inc.

Developing a Scientific Virtue-Based Approach to Science Ethics Training.

PubMed

Pennock, Robert T; O'Rourke, Michael

2017-02-01

Responsible conduct of research training typically includes only a subset of the issues that ought to be included in science ethics and sometimes makes ethics appear to be a set of externally imposed rules rather than something intrinsic to scientific practice. A new approach to science ethics training based upon Pennock's notion of the scientific virtues may help avoid such problems. This paper motivates and describes three implementations-theory-centered, exemplar-centered, and concept-centered-that we have developed in courses and workshops to introduce students to this scientific virtue-based approach.

Genomic futures of prenatal screening: ethical reflection.

PubMed

Dondorp, W J; Page-Christiaens, G C M L; de Wert, G M W R

2016-05-01

The practice of prenatal screening is undergoing important changes as a result of the introduction of genomic testing technologies at different stages of the screening trajectory. It is expected that eventually it will become possible to routinely obtain a comprehensive 'genome scan' of all fetuses. Although this will still take several years, there are clear continuities between present developments and this future scenario. As this review shows, behind the still limited scope of screening for common aneuploidies, a rapid widening of the range of conditions tested for is already taking shape at the invasive testing stage. But the continuities are not just technical; they are also ethical. If screening for Down's syndrome is a matter of providing autonomous reproductive choice, then why would providing the choice to have a full fetal genome scan be something entirely different? There is a clear need for a sustainable normative framework that will have to answer three challenges: the indeterminateness of the autonomy paradigm, the need to acknowledge the future child as an interested stakeholder, and the prospect of broad-scope genomic prenatal screening with a double purpose: autonomy and prevention. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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

Public consultation in ethics: an experiment in representative ethics.

PubMed

Burgess, Michael M

2004-01-01

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse set of moral experiences. Consultation must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groups tend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues.

Ethics Instruction in Library and Information Science: The Role of "Ethics across the Curriculum"

ERIC Educational Resources Information Center

Smith, Bernie Todd

2010-01-01

Ethics is an important element of most graduate professional training programs. In the field of Library and Information Science (LIS) the inclusion of ethics in the curriculum is supported by a position paper by library educators and is monitored in the accreditation of graduate programs. Despite the many LIS programs which claim to integrate…

The ethics of smart cities and urban science

PubMed Central

2016-01-01

Software-enabled technologies and urban big data have become essential to the functioning of cities. Consequently, urban operational governance and city services are becoming highly responsive to a form of data-driven urbanism that is the key mode of production for smart cities. At the heart of data-driven urbanism is a computational understanding of city systems that reduces urban life to logic and calculative rules and procedures, which is underpinned by an instrumental rationality and realist epistemology. This rationality and epistemology are informed by and sustains urban science and urban informatics, which seek to make cities more knowable and controllable. This paper examines the forms, practices and ethics of smart cities and urban science, paying particular attention to: instrumental rationality and realist epistemology; privacy, datafication, dataveillance and geosurveillance; and data uses, such as social sorting and anticipatory governance. It argues that smart city initiatives and urban science need to be re-cast in three ways: a re-orientation in how cities are conceived; a reconfiguring of the underlying epistemology to openly recognize the contingent and relational nature of urban systems, processes and science; and the adoption of ethical principles designed to realize benefits of smart cities and urban science while reducing pernicious effects. This article is part of the themed issue ‘The ethical impact of data science’. PMID:28336794

Ethics and Social Responsibility in Science Education.

ERIC Educational Resources Information Center

Frazer, M. J., Ed.; Kornhauser, A., Ed.

Questions of ethics and social responsibility are considered by many to be important issues in science education. Teachers are being exposed to the difficult task of dealing with global problems and values. This book contains papers which deal with this apparent dilemma, raising questions about the responsibilities of science educators in the…

Bioethics methods in the ethical, legal, and social implications of the human genome project literature.

PubMed

Walker, Rebecca L; Morrissey, Clair

2014-11-01

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations). © 2013 John Wiley & Sons Ltd.

BIOETHICS METHODS IN THE ETHICAL, LEGAL, AND SOCIAL IMPLICATIONS OF THE HUMAN GENOME PROJECT LITERATURE

PubMed Central

Walker, Rebecca; Morrissey, Clair

2013-01-01

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003-2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations). PMID:23796275

The impact of institutional ethics on academic health sciences library leadership: a survey of academic health sciences library directors.

PubMed

Tooey, Mary Joan M J; Arnold, Gretchen N

2014-10-01

Ethical behavior in libraries goes beyond service to users. Academic health sciences library directors may need to adhere to the ethical guidelines and rules of their institutions. Does the unique environment of an academic health center imply different ethical considerations? Do the ethical policies of institutions affect these library leaders? Do their personal ethical considerations have an impact as well? In December 2013, a survey regarding the impact of institutional ethics was sent to the director members of the Association of Academic Health Sciences Libraries. The objective was to determine the impact of institutional ethics on these leaders, whether through personal conviction or institutional imperative.

The impact of institutional ethics on academic health sciences library leadership: a survey of academic health sciences library directors

PubMed Central

Tooey, Mary Joan (M.J.); Arnold, Gretchen N.

2014-01-01

Ethical behavior in libraries goes beyond service to users. Academic health sciences library directors may need to adhere to the ethical guidelines and rules of their institutions. Does the unique environment of an academic health center imply different ethical considerations? Do the ethical policies of institutions affect these library leaders? Do their personal ethical considerations have an impact as well? In December 2013, a survey regarding the impact of institutional ethics was sent to the director members of the Association of Academic Health Sciences Libraries. The objective was to determine the impact of institutional ethics on these leaders, whether through personal conviction or institutional imperative. PMID:25349542

Big data, open science and the brain: lessons learned from genomics.

PubMed

Choudhury, Suparna; Fishman, Jennifer R; McGowan, Michelle L; Juengst, Eric T

2014-01-01

The BRAIN Initiative aims to break new ground in the scale and speed of data collection in neuroscience, requiring tools to handle data in the magnitude of yottabytes (10(24)). The scale, investment and organization of it are being compared to the Human Genome Project (HGP), which has exemplified "big science" for biology. In line with the trend towards Big Data in genomic research, the promise of the BRAIN Initiative, as well as the European Human Brain Project, rests on the possibility to amass vast quantities of data to model the complex interactions between the brain and behavior and inform the diagnosis and prevention of neurological disorders and psychiatric disease. Advocates of this "data driven" paradigm in neuroscience argue that harnessing the large quantities of data generated across laboratories worldwide has numerous methodological, ethical and economic advantages, but it requires the neuroscience community to adopt a culture of data sharing and open access to benefit from them. In this article, we examine the rationale for data sharing among advocates and briefly exemplify these in terms of new "open neuroscience" projects. Then, drawing on the frequently invoked model of data sharing in genomics, we go on to demonstrate the complexities of data sharing, shedding light on the sociological and ethical challenges within the realms of institutions, researchers and participants, namely dilemmas around public/private interests in data, (lack of) motivation to share in the academic community, and potential loss of participant anonymity. Our paper serves to highlight some foreseeable tensions around data sharing relevant to the emergent "open neuroscience" movement.

Emphasizing Morals, Values, Ethics, and Character Education in Science Education and Science Teaching

ERIC Educational Resources Information Center

Chowdhury, Mohammad

2016-01-01

This article presents the rationale and arguments for the presence of morals, values, ethics and character education in science curriculum and science teaching. The author examines how rapid science and technological advancements and globalization are contributing to the complexities of social life and underpinning the importance of morals, values…

Science, politics and ethics in the low dose debate.

PubMed

Baverstock, Keith

2005-01-01

The roles of science, ethics and politics are identified in respect of the risks of exposure to low-dose radiation. Two case studies, the epidemiology of the United Kingdom nuclear test veterans and the risks to civilians associated with the military use of depleted uranium, are considered in the context of their ethical framing, scientific evaluation and political resolution. Two important issues for the present and future, the safe management of U.K. radioactive waste and the future of nuclear power, in which the science of low dose effects will be crucial and where the ethical issues are much more complex, are introduced. Specific consideration is given to the potential hereditary effects of ionising radiation in relation to the current state of radiobiological knowledge. It is concluded that for science to be useful in public health policy making there needs to be some reform from within the profession and the political imperative for freely independent scientific institutions.

Ethical Issues of Scientific Inquiry in Health Science Education.

ERIC Educational Resources Information Center

Pigg, R. Morgan, Jr., Ed.

1994-01-01

This monograph contains 13 papers on the ethics of planning, conducting, and reporting research in health sciences education. It includes four background papers and nine perspective papers. The titles are: (1) "The Imperative for Ethical Conduct in Scientific Inquiry" (Steve M. Dorman); (2) "Fundamental Principles of Ethical…

Brain Science of Ethics: Present Status and the Future

ERIC Educational Resources Information Center

Aoki, Ryuta; Funane, Tsukasa; Koizumi, Hideaki

2010-01-01

Recent advances in technologies for neuroscientific research enable us to investigate the neurobiological substrates of the human ethical sense. This article introduces several findings in "the brain science of ethics" obtained through "brain-observation" and "brain-manipulation" approaches. Studies over the past decade have revealed that several…

Publication ethics from the perspective of PhD students of health sciences: a limited experience.

PubMed

Arda, Berna

2012-06-01

Publication ethics, an important subtopic of science ethics, deals with determination of the misconducts of science in performing research or in the dissemination of ideas, data and products. Science, the main features of which are secure, reliable and ethically obtained data, plays a major role in shaping the society. As long as science maintains its quality by being based on reliable and ethically obtained data, it will be possible to maintain its role in shaping the society. This article is devoted to the presentation of opinions of PhD candidate students in health sciences in Ankara concerning publication ethics. The data obtained from 143 PhD students from the fields of medicine, dentistry, pharmacy and veterinary reveal limited but unique experiences. It also shows that plagiarism is one of the worst issues in the publication ethics from the perspective of these young academics.

Animal minds and neuroimaging--bridging the gap between science and ethics?

PubMed

Buller, Tom

2014-04-01

As Colin Allen has argued, discussions between science and ethics about the mentality and moral status of nonhuman animals often stall on account of the fact that the properties that ethics presents as evidence of animal mentality and moral status, namely consciousness and sentience, are not observable "scientifically respectable" properties. In order to further discussion between science and ethics, it seems, therefore, that we need to identify properties that would satisfy both domains. In this article I examine the mentality and moral status of nonhuman animals from the perspective of neuroethics. By adopting this perspective, we can see how advances in neuroimaging regarding (1) research into the neurobiology of pain, (2) "brain reading," and (3) the minimally conscious state may enable us to identify properties that help bridge the gap between science and ethics, and hence help further the debate about the mentality and moral status of nonhuman animals.

Improving epistemological beliefs and moral judgment through an STS-based science ethics education program.

PubMed

Han, Hyemin; Jeong, Changwoo

2014-03-01

This study develops a Science-Technology-Society (STS)-based science ethics education program for high school students majoring in or planning to major in science and engineering. Our education program includes the fields of philosophy, history, sociology and ethics of science and technology, and other STS-related theories. We expected our STS-based science ethics education program to promote students' epistemological beliefs and moral judgment development. These psychological constructs are needed to properly solve complicated moral and social dilemmas in the fields of science and engineering. We applied this program to a group of Korean high school science students gifted in science and engineering. To measure the effects of this program, we used an essay-based qualitative measurement. The results indicate that there was significant development in both epistemological beliefs and moral judgment. In closing, we briefly discuss the need to develop epistemological beliefs and moral judgment using an STS-based science ethics education program.

Incorporating "Ethics in Science" into a Summer Undergraduate Research Program.

ERIC Educational Resources Information Center

Shachter, Amy M.; McNelis, Brian J.; Shanks, Thomas

1999-01-01

Describes a program at Santa Clara University, California where undergraduates participated in weekly Ethics in Science discussions while conducting scientific research. The program was successful in improving the ethical sensitivity, judgment, and commitment of the undergraduates. (WRM)

Professional Ethics in the College and University Science Curriculum

NASA Astrophysics Data System (ADS)

Kovac, Jeffrey

Scientific ethics is a subset of professional ethics, the special rules of conduct adopted by those engaged in one of the pursuits regarded as professions, such as law, medicine, engineering and science. Professional ethics derive from a moral ideal based on service. This ideal leads to a pair of bargains: an internal bargain that defines the internal code of practice within the profession, and an external bargain that defines the relationship between the profession and society. This article develops the internal and external bargains that are the basis of scientific ethics from both an historical and a philosophical perspective and makes suggestions as to how the teaching of scientific ethics can be integrated into the undergraduate curriculum.

How to Have a Successful Science and Ethics Discussion

ERIC Educational Resources Information Center

Chowning, Jeanne Ting

2005-01-01

Some teachers are uncomfortable with teaching ethics, a subject that science teachers often have very little experience with. Ethics as a discipline is full of unfamiliar terms and its own jargon. Other teachers fear classroom discussions getting out of control, degenerating into a battle of opinions, or having parents and administrators confuse…

The Translational Potential of Research on the Ethical, Legal and Social Implications of Genomics

PubMed Central

Burke, Wylie; Appelbaum, Paul; Dame, Lauren; Marshall, Patricia; Press, Nancy; Pyeritz, Reed; Sharp, Richard; Juengst, Eric

2014-01-01

Federally funded research on the ethical, legal and social implications of genomics (“ELSI” research) includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics, how foundational research in bioethics, law, and the social sciences might inform those policies, and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in the light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research concerned to facilitate policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law. PMID:24946153

Student projects in medicine: a lesson in science and ethics.

PubMed

Edwards, Sarah J L

2009-11-01

Regulation of biomedical research is the subject of considerable debate in the bioethics and health policy worlds. The ethics and governance of medical student projects is becoming an increasingly important topic in its own right, especially in the U.K., where there are periodic calls to change it. My main claim is that there seems to be no good reason for treating student projects differently from projects led by qualified and more experienced scientists and hence no good grounds for changing the current system of ethics review. I first suggest that the educational objectives cannot be met without laying down standards of good science, whatever they may be. Weak science is unnecessary for educational purposes, and it is, in any case, unlikely to produce good researchers in the future. Furthermore, it is curious to want to change the system of ethics review specifically for students when it is the science that is at stake, and when the science now falls largely outside the ethics remit. I further show that ethics review is nevertheless important since students carry a new potential conflict of interests that warrants independent oversight which supervisory support does not offer. This potential conflict may become more morally troublesome the greater the risks to the subjects of the research, and students may impose greater risks on their subjects (relative to professional researchers) by virtue of being inexperienced, whatever the nature of the project. Pragmatic concerns may finally be allayed by organizing the current system more efficiently at critical times of the university calendar.

Moving life science ethics debates beyond national borders: some empirical observations.

PubMed

Bezuidenhout, Louise

2014-06-01

The life sciences are increasingly being called on to produce "socially robust" knowledge that honors the social contract between science and society. This has resulted in the emergence of a number of "broad social issues" that reflect the ethical tensions in these social contracts. These issues are framed in a variety of ways around the world, evidenced by differences in regulations addressing them. It is important to question whether these variations are simply regulatory variations or in fact reflect a contextual approach to ethics that brings into question the existence of a system of "global scientific ethics". Nonetheless, within ethics education for scientists these broad social issues are often presented using this scheme of global ethics due to legacies of science ethics pedagogy. This paper suggests this may present barriers to fostering international discourse between communities of scientists, and may cause difficulties in harmonizing (and transporting) national regulations for the governance of these issues. Reinterpreting these variations according to how the content of ethical principles is attributed by communities is proposed as crucial for developing a robust international discourse. To illustrate this, the paper offers some empirical fieldwork data that considers how the concept of dual-use (as a broad social issue) was discussed within African and UK laboratories. Demonstrating that African scientists reshaped the concept of dual-use according to their own research environmental pressures and ascribed alternative content to the principles that underpin it, suggests that the limitations of a "global scientific ethics" system for these issues cannot be ignored.

Social and ethical dimensions of nanoscale science and engineering research.

PubMed

Sweeney, Aldrin E

2006-07-01

Continuing advances in human ability to manipulate matter at the atomic and molecular levels (i.e. nanoscale science and engineering) offer many previously unimagined possibilities for scientific discovery and technological development. Paralleling these advances in the various science and engineering sub-disciplines is the increasing realization that a number of associated social, ethical, environmental, economic and legal dimensions also need to be explored. An important component of such exploration entails the identification and analysis of the ways in which current and prospective researchers in these fields conceptualize these dimensions of their work. Within the context of a National Science Foundation funded Research Experiences for Undergraduates (REU) program in nanomaterials processing and characterization at the University of Central Florida (2002-2004), here I present for discussion (i) details of a "nanotechnology ethics" seminar series developed specifically for students participating in the program, and (ii) an analysis of students' and participating research faculty's perspectives concerning social and ethical issues associated with nanotechnology research. I conclude with a brief discussion of implications presented by these issues for general scientific literacy and public science education policy.

Ethical, legal, and social implications of incorporating genomic information into electronic health records.

PubMed

Hazin, Ribhi; Brothers, Kyle B; Malin, Bradley A; Koenig, Barbara A; Sanderson, Saskia C; Rothstein, Mark A; Williams, Marc S; Clayton, Ellen W; Kullo, Iftikhar J

2013-10-01

The inclusion of genomic data in the electronic health record raises important ethical, legal, and social issues. In this article, we highlight these challenges and discuss potential solutions. We provide a brief background on the current state of electronic health records in the context of genomic medicine, discuss the importance of equitable access to genome-enabled electronic health records, and consider the potential use of electronic health records for improving genomic literacy in patients and providers. We highlight the importance of privacy, access, and security, and of determining which genomic information is included in the electronic health record. Finally, we discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data, and nondocumentation and duty to warn family members at potential genetic risk.

Holistic science: An understanding of science education encompassing ethical and social issues

NASA Astrophysics Data System (ADS)

Malekpour, Susan

Science has often been viewed, by the majority of our educators and the general public, as being objective and emotionless. Based on this view, our educators teach science in the same manner, objectively and in an abstract form. This manner of teaching has hindered our learners' ability for active learning and distanced them from the subject matter. In this action research, I have examined holistic science pedagogy in conjunction with a constructivism theory. In holistic science pedagogy, scientific knowledge is combined with subjective personal experiences and social issues. There is an interaction between student and scientific data when the student's context, relationships, and lived experiences that play a role in the scientific recognition of the world were incorporated into the learning process. In this pedagogical model, the factual content was viewed from the context of social and ethical implications. By empowering learners with this ability, science knowledge will no longer be exclusive to a select group. This process empowers the general population with the ability to understand scientific knowledge and therefore the ability to make informed decisions based on this knowledge. The goal was to make curriculum developers more conscious of factors that can positively influence the learning process and increase student engagement and understanding within the science classroom. The holistic approach to science pedagogy has enlightened and empowered our adult learners more effectively. Learners became more actively engaged in their own process of learning. Teachers must be willing to listen and implement student suggestions on improving the teaching/learning process. Teachers should be willing to make the effort in connecting with their students by structuring courses so the topics would be relevant to the students in relation to real world and social/ethical and political issues. Holistic science pedagogy strives for social change through the empowerment of

From 'implications' to 'dimensions': science, medicine and ethics in society.

PubMed

Pickersgill, Martyn D

2013-03-01

Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with 'ethics', and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more 'traditional' modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society.

[Science and ethics, therapeutic misconception and mirage].

PubMed

Raymond, J; Long, H

2008-12-01

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

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

PubMed

Nyika, Aceme

2009-11-01

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

Goodbye genome paper, hello genome report: the increasing popularity of 'genome announcements' and their impact on science.

PubMed

Smith, David Roy

2017-05-01

Next-generation sequencing technologies have revolutionized genomics and altered the scientific publication landscape. Life-science journals abound with genome papers-peer-reviewed descriptions of newly sequenced chromosomes. Although they once filled the pages of Nature and Science, genome papers are now mostly relegated to journals with low-impact factors. Some have forecast the death of the genome paper and argued that they are using up valuable resources and not advancing science. However, the publication rate of genome papers is on the rise. This increase is largely because some journals have created a new category of manuscript called genome reports, which are short, fast-tracked papers describing a chromosome sequence(s), its GenBank accession number and little else. In 2015, for example, more than 2000 genome reports were published, and 2016 is poised to bring even more. Here, I highlight the growing popularity of genome reports and discuss their merits, drawbacks and impact on science and the academic publication infrastructure. Genome reports can be excellent assets for the research community, but they are also being used as quick and easy routes to a publication, and in some instances they are not peer reviewed. One of the best arguments for genome reports is that they are a citable, user-generated genomic resource providing essential methodological and biological information, which may not be present in the sequence database. But they are expensive and time-consuming avenues for achieving such a goal. © The Author 2016. Published by Oxford University Press.

Ethics in Science: The Unique Consequences of Chemistry.

PubMed

Kovac, Jeffrey

2015-01-01

This article discusses the ethical issues unique to the science and practice of chemistry. These issues arise from chemistry's position in the middle between the theoretical and the practical, a science concerned with molecules that are of the right size to directly affect human life. Many of the issues are raised by the central activity of chemistry--synthesis. Chemists make thousands of new substances each year. Many are beneficial, but others are threats. Since the development of the chemical industry in the nineteenth century, chemistry has contributed to the deterioration of the environment but has also helped to reduce pollution. Finally, we discuss the role of codes of ethics and whether the current codes of conduct for chemists are adequate for the challenges of today's world.

Case Studies in Science Ethics

NASA Astrophysics Data System (ADS)

Williams, Karen

2010-03-01

Everyone in science should have ethics education training. I have seen graduate students taken advantage of by their mentors. Many of us have seen misconduct...but what should we do about it? Young scientists are often unaware of the rules in science and make mistakes because of their ignorance of the rules in that particular field of study. Then there are an increasing number of cases in the news of overt cases of misrepresentation in science. All are welcome to attend this discussion of case studies. A case study on topics such as: how to treat data properly, how our values in science affect our work, who gets authorship on scientific papers, who is first author on a paper, what you should do if you uncover misconduct or plagiarism in your university, and we will discuss the scientist's role in society. This will be a painless, non-confrontational small group, then large group discussion of each case

Ethical issues in human genome epidemiology: a case study based on the Japanese American Family Study in Seattle, Washington.

PubMed

Austin, Melissa A

2002-04-01

Recent completion of the draft sequence of the human genome has been greeted with both excitement and skepticism, and the potential of this accomplishment for advancing public health has been tempered by ethical concerns about the protection of human subjects. This commentary explores ethical issues arising in human genome epidemiology by using a case study approach based on the ongoing Japanese American Family Study at the University of Washington in Seattle (1994-2003). Ethical issues encountered in designing the study, collecting the data, and reporting the study results are considered. When developing studies, investigators must consider whether to restrict the study to specific racial or ethnic groups and whether community involvement is appropriate. Once the study design is in place, further ethical issues emerge, including obtaining informed consent for DNA banking and protecting the privacy and confidentiality of family members. Finally, investigators must carefully consider whether to report genotype results to study participants and whether pedigrees illustrating the results of the study will be published. Overall, the promise of genomics for improving public health must be pursued based on the fundamental ethical principles of respect for persons, beneficence, and justice.

The ethics weathervane.

PubMed

Knoppers, Bartha Maria; Chadwick, Ruth

2015-09-04

Global collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization. The globalization of genomic research warrants an approach to governance policies grounded in human rights. A human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to benefit from scientific progress, and to the right of all scientists to be recognized for their contributions.

Climate Engineering: A Nexus of Ethics, Science and Governance

NASA Astrophysics Data System (ADS)

Ackerman, T. P.

2015-12-01

Climate engineering (or geoengineering) has emerged as a possible component of a strategy to mitigate global warming. This emergence has produced a novel intersection of atmospheric science, environmental ethics and global governance. The scientific questions of climate engineering, while difficult to answer in their own right, are compounded by ethical considerations regarding whether these questions should be addressed and governance questions of how research and deployment could be managed. In an effort to address this intersection of ideas and provide our students with a rich interdisciplinary experience, we (T. Ackerman and S. Gardiner, both senior professors at the University of Washington) taught a cross-listed course in the Atmospheric Sciences and Philosophy departments. The course attracted 12 students (mostly graduate students but with two upper level undergraduates), with roughly equal representation from environmental sciences, ethics, and public policy disciplines, as well as two post-docs. Our primary goal for the course was to develop a functioning research community to address the core issues at the intersection of science and ethics. In this presentation, we discuss the course structure, identify strategies that were successful (or less so), and describe outcomes. We consider this course to be primarily pedagogical in nature, but we also recognize that many of the students in the class, perhaps even a majority, are intending to pursue careers outside academia in areas of public policy, environmental consulting, etc., which added an extra dimension to our class. Here, we also discuss the possibility of developing and teaching such courses in an academic environment that is stressed financially and increasingly dependent on metrics related to class size and student credit hours.

Ethical Issues and the Life Sciences. Test Edition. AAAS Study Guides on Contemporary Problems.

ERIC Educational Resources Information Center

Kieffer, George H.

This is one of several study guides on contemporary problems produced by the American Association for the Advancement of Science with support of the National Science Foundation. This study guide on Ethical Issues and the Life Sciences includes the following sections: (1) Introduction; (2) The Search for an Ethic; (3) Biomedical Issues including…

Caring Enough to Teach Science. Helping Pre-service Teachers View Science Instruction as an Ethical Responsibility

NASA Astrophysics Data System (ADS)

Grinell, Smith; Rabin, Colette

2017-11-01

The goal of this project was to motivate pre-service elementary teachers to commit to spending significant instructional time on science in their future classrooms despite their self-assessed lack of confidence about teaching science and other impediments (e.g., high-stakes testing practices that value other subjects over science). Pre-service teachers in science methods courses explored connections between science and ethics, specifically around issues of ecological sustainability, and grappled with their ethical responsibilities as teachers to provide science instruction. Survey responses, student "quick-writes," interview transcripts, and field notes were analyzed. Findings suggest that helping pre-service teachers see these connections may shape their beliefs and dispositions in ways that may motivate them to embark on the long road toward improving their science pedagogical content knowledge and ultimately to teach science to their students more often and better than they otherwise might. The approach may also offer a way for teachers to attend to the moral work of teaching.

Ethics in Science: The Unique Consequences of Chemistry

PubMed Central

Kovac, Jeffrey

2015-01-01

This article discusses the ethical issues unique to the science and practice of chemistry. These issues arise from chemistry’s position in the middle between the theoretical and the practical, a science concerned with molecules that are of the right size to directly affect human life. Many of the issues are raised by the central activity of chemistry––synthesis. Chemists make thousands of new substances each year. Many are beneficial, but others are threats. Since the development of the chemical industry in the nineteenth century, chemistry has contributed to the deterioration of the environment but has also helped to reduce pollution. Finally, we discuss the role of codes of ethics and whether the current codes of conduct for chemists are adequate for the challenges of today’s world. PMID:26155729

TUTORIAL: 'Mind the gap': science and ethics in nanotechnology

NASA Astrophysics Data System (ADS)

Mnyusiwalla, Anisa; Daar, Abdallah S.; Singer, Peter A.

2003-03-01

Nanotechnology (NT) is a rapidly progressing field. Advances will have a tremendous impact on fields such as materials, electronics, and medicine. A thorough review of the current literature, governmental funding, and policy documents was undertaken. Despite the potential impact of NT, and the abundance of funds, our research revealed that there is a paucity of serious, published research into the ethical, legal, and social implications of NT. As the science leaps ahead, the ethics lags behind. There is danger of derailing NT if the study of ethical, legal, and social implications does not catch up with the speed of scientific development.

Ethical guidelines in genetics and genomics. An Islamic perspective.

PubMed

Al-Aqeel, Aida I

2005-12-01

We are at a time of unprecedented increase in knowledge of rapidly changing technology. Such biotechnology especially when it involves human subjects raises complex ethical, legal, social and religious issues. A World Health Organization expert consultation concluded that "genetics advances will only be acceptable if their application is carried out ethically, with due regard to autonomy, justice, education and the beliefs and resources of each nation and community." Public health authorities are increasingly concerned by the high rate of births with genetic disorders especially in developing countries where Muslims are a majority. Therefore, it is imperative to scrutinize the available methods of prevention and management of genetic disorders. A minimum level of cultural awareness is a necessary prerequisite for the delivery of care that is culturally sensitive, especially in Islamic countries. Islam presents a complete moral, ethical, and medical framework, it is a religion which encompasses the secular with the spiritual, the mundane with the celestial and hence forms the basis of the ethical, moral and even juridical attitudes and laws towards any problem or situation. Islamic teachings carry a great deal of instructions for health promotion and disease prevention including hereditary and genetic disorders, therefore, we will discuss how these teachings play an important role in the diagnostic, management and preventive measures including: genomic research; population genetic screening pre-marital screening, pre-implantation genetic diagnosis; assisted reproduction technology; stem cell therapy; genetic counseling and others.

Moving Life Science Ethics Debates Beyond National Borders: Some Empirical Observations

PubMed Central

Bezuidenhout, Louise

2016-01-01

The life sciences are increasingly being called on to produce “socially robust” knowledge that honors the social contract between science and society. This has resulted in the emergence of a number of “broad social issues” that reflect the ethical tensions in these social contracts. These issues are framed in a variety of ways around the world, evidenced by differences in regulations addressing them. It is important to question whether these variations are simply regulatory variations or in fact reflect a contextual approach to ethics that brings into question the existence of a system of “global scientific ethics”. Nonetheless, within ethics education for scientists these broad social issues are often presented using this scheme of global ethics due to legacies of science ethics pedagogy. This paper suggests this may present barriers to fostering international discourse between communities of scientists, and may cause difficulties in harmonizing (and transporting) national regulations for the governance of these issues. Reinterpreting these variations according to how the content of ethical principles is attributed by communities is proposed as crucial for developing a robust international discourse. To illustrate this, the paper offers some empirical fieldwork data that considers how the concept of dual-use (as a broad social issue) was discussed within African and UK laboratories. Demonstrating that African scientists reshaped the concept of dual-use according to their own research environmental pressures and ascribed alternative content to the principles that underpin it, suggests that the limitations of a “global scientific ethics” system for these issues cannot be ignored. PMID:24046220

The walkshop approach to science and technology ethics.

PubMed

Wickson, Fern; Strand, Roger; Kjølberg, Kamilla Lein

2015-02-01

In research and teaching on ethical aspects of emerging sciences and technologies, the structure of working environments, spaces and relationships play a significant role. Many of the routines and standard practices of academic life, however, do little to actively explore and experiment with these elements. They do even less to address the importance of contextual and embodied dimensions of thinking. To engage these dimensions, we have benefitted significantly from practices that take us out of seminar rooms, offices and laboratories as well as beyond traditional ways of working and interacting. We have called one such practice the 'walkshop'. Through walkshops, we have spent several days walking together with our colleagues and students in open outdoor spaces, keeping a sustained intellectual discussion on ethical aspects of science, technology and innovation while moving through these landscapes. For us, this has generated useful opportunities to escape established hierarchies, roles and patterns of thought and to rethink conceptual and philosophical issues from new perspectives, under new attitudes and with renewed energy. In this paper we wish to highlight the potential benefits of the walkshop approach by sharing some of our experiences and describing how we have prepared for and carried out these events. We share this information in the hope that we may encourage others to both experiment with the walkshop approach and exchange information on their own innovative processes for research and teaching in science and engineering ethics.

"Harnessing genomics to improve health in India" – an executive course to support genomics policy

PubMed Central

Acharya, Tara; Kumar, Nandini K; Muthuswamy, Vasantha; Daar, Abdallah S; Singer, Peter A

2004-01-01

Background The benefits of scientific medicine have eluded millions in developing countries and the genomics revolution threatens to increase health inequities between North and South. India, as a developing yet also industrialized country, is uniquely positioned to pioneer science policy innovations to narrow the genomics divide. Recognizing this, the Indian Council of Medical Research and the University of Toronto Joint Centre for Bioethics conducted a Genomics Policy Executive Course in January 2003 in Kerala, India. The course provided a forum for stakeholders to discuss the relevance of genomics for health in India. This article presents the course findings and recommendations formulated by the participants for genomics policy in India. Methods The course goals were to familiarize participants with the implications of genomics for health in India; analyze and debate policy and ethical issues; and develop a multi-sectoral opinion leaders' network to share perspectives. To achieve these goals, the course brought together representatives of academic research centres, biotechnology companies, regulatory bodies, media, voluntary, and legal organizations to engage in discussion. Topics included scientific advances in genomics, followed by innovations in business models, public sector perspectives, ethics, legal issues and national innovation systems. Results Seven main recommendations emerged: increase funding for healthcare research with appropriate emphasis on genomics; leverage India's assets such as traditional knowledge and genomic diversity in consultation with knowledge-holders; prioritize strategic entry points for India; improve industry-academic interface with appropriate incentives to improve public health and the nation's wealth; develop independent, accountable, transparent regulatory systems to ensure that ethical, legal and social issues are addressed for a single entry, smart and effective system; engage the public and ensure broad-based input into

Social and Ethical Implications of Genomics, Race, Ethnicity and Health Inequities

PubMed Central

Knerr, Sarah

2010-01-01

Objectives To review ethical, ethnic/ancestral, and societal issues of genetic and genomic information and technologies in the context of racial and ethnic health disparities. Data sources Research and journal articles, government reports, web sites. Conclusion As knowledge of human genetic variation and its link to diseases continues to grow, some see race and ethnicity well poised to serve as genetic surrogates in predicting disease etiology and treatment response. However, stereotyping and bias, in clinical interactions can be barriers to effective treatment for racial and ethnic minority patients. Implications for nursing practice The nursing profession has a key role in assuring that genomic healthcare does not enhance racial and ethnic health inequities. This will require utilization of new genomic knowledge and caring for each patient as an individual in a culturally and clinically appropriate manner. PMID:19000599

Rethinking the Ethics of Scientific Knowledge: A Case Study of Teaching the Environment in Science Classrooms

ERIC Educational Resources Information Center

Kim, Mijung; Roth, Wolff-Michael

2008-01-01

In this paper we argue that scientific literacy ought to be rethought in that it involves ethics as its core element. Considering the fact that science education has addressed ethical dilemmas of Science, Technology, Society and Environment (STSE) issues, it is worthwhile to question what the ethics of scientific knowledge mean in terms of their…

Human genome education model project. Ethical, legal, and social implications of the human genome project: Education of interdisciplinary professionals

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

Weiss, J.O.; Lapham, E.V.

1996-12-31

This meeting was held June 10, 1996 at Georgetown University. The purpose of this meeting was to provide a multidisciplinary forum for exchange of state-of-the-art information on the human genome education model. Topics of discussion include the following: psychosocial issues; ethical issues for professionals; legislative issues and update; and education issues.

Evoking vigilance: Would you (dis)trust a scientist who discusses ethical implications of research in a science blog?

PubMed

Hendriks, Friederike; Kienhues, Dorothe; Bromme, Rainer

2016-11-01

The experimental studies presented here investigated whether discussing ethical implications of preliminary scientific results in a science blog would impact blog readers' perception of the responsible scientist blogger's epistemic trustworthiness (on the dimensions expertise, integrity, and benevolence). They also investigated whether it made a difference in who had brought forward the ethics aspects: the responsible scientist blogger or another expert. Results indicate that by the mere introduction of ethics, people infer something about the blogger's communicative intentions: Introducing ethical aspects seems to raise vigilance about an expert's benevolence and integrity. Moreover, ratings of epistemic trustworthiness differed depending on who added ethical arguments: If ethics were introduced by the scientist blogger himself, his benevolence and integrity were rated higher than when ethics were introduced by another expert. These results are relevant for science bloggers, science communicators, and researchers who study laypeople's understanding of epistemic uncertainty within science. © The Author(s) 2016.

[Manipulation of the human genome: ethics and law].

PubMed

Goulart, Maria Carolina Vaz; Iano, Flávia Godoy; Silva, Paulo Maurício; Sales-Peres, Silvia Helena de Carvalho; Sales-Peres, Arsênio

2010-06-01

The molecular biology has provided the basic tool for geneticists deepening in the molecular mechanisms that influence different diseases. It should be noted the scientific and moral responsibility of the researchers, because the scientists should imagine the moral consequences of the commercial application of genetic tests, since this fact involves not only the individual and their families, but the entire population. Besides being also necessary to make a reflection on how this information from the human genome will be used, for good or bad. The objective of this review was to bring the light of knowledge, data on characteristics of the ethical application of molecular biology, linking it with the rights of human beings. After studying literature, it might be observed that the Human Genome Project has generated several possibilities, such as the identification of genes associated with diseases with synergistic properties, but sometimes modifying behavior to genetically intervene in humans, bringing benefits or social harm. The big challenge is to decide what humanity wants on this giant leap.

Reverence and ethics in science.

PubMed

Kovac, Jeffrey

2013-09-01

Codes of ethics abound in science, but the question of why such codes should be obeyed is rarely asked. Various reasons for obeying a professional code have been proposed, but all are unsatisfactory in that they do not really motivate behavior. This article suggests that the long forgotten virtue of reverence provides both a reason to obey a professional code and motivation to do so. In addition, it discusses the importance of reverence as a cardinal virtue for scientists drawing on the ideas of Paul Woodruff on the role of virtue in community.

How can ethics relate to science? The case of stem cell research

PubMed Central

Carvalho, Ana Sofia; Ramalho-Santos, João

2013-01-01

We live in an era of an important turning point in the relationship between ethics (or, more accurately, bioethics) and science, notably due to both public interest and the gradual tightening of the gap in time between scientific discoveries and ethical reflection. The current bioethics debates of emerging situations (pluripotent stem cells, gene therapy, nanotechnology) have undoubtedly contributed to this change. Today, science happens and bioethics reflects on the possibilities, considers the risks, and advances proposals, which, without being scientific, can also imprint a mark on the path of scientific development. In this article, through the narrative of stem cell research, we will try to illustrate how bringing a bioethical viewpoint to the scientific debate can become a healthy exercise in both ethics and science, especially as narratives shift, as was the case in this field due to the introduction of induced pluripotent stem cells, the advent of which is not easily dissociated from the controversies related to embryo research. We should perhaps welcome this trend as promising for the future relationship between ethics and scientific research, providing a stimulus (and not a block) to the ever-evolving scientific discourse. PMID:23150079

How can ethics relate to science? The case of stem cell research.

PubMed

Carvalho, Ana Sofia; Ramalho-Santos, João

2013-06-01

We live in an era of an important turning point in the relationship between ethics (or, more accurately, bioethics) and science, notably due to both public interest and the gradual tightening of the gap in time between scientific discoveries and ethical reflection. The current bioethics debates of emerging situations (pluripotent stem cells, gene therapy, nanotechnology) have undoubtedly contributed to this change. Today, science happens and bioethics reflects on the possibilities, considers the risks, and advances proposals, which, without being scientific, can also imprint a mark on the path of scientific development. In this article, through the narrative of stem cell research, we will try to illustrate how bringing a bioethical viewpoint to the scientific debate can become a healthy exercise in both ethics and science, especially as narratives shift, as was the case in this field due to the introduction of induced pluripotent stem cells, the advent of which is not easily dissociated from the controversies related to embryo research. We should perhaps welcome this trend as promising for the future relationship between ethics and scientific research, providing a stimulus (and not a block) to the ever-evolving scientific discourse.

Genomics in the land of regulatory science.

PubMed

Tong, Weida; Ostroff, Stephen; Blais, Burton; Silva, Primal; Dubuc, Martine; Healy, Marion; Slikker, William

2015-06-01

Genomics science has played a major role in the generation of new knowledge in the basic research arena, and currently question arises as to its potential to support regulatory processes. However, the integration of genomics in the regulatory decision-making process requires rigorous assessment and would benefit from consensus amongst international partners and research communities. To that end, the Global Coalition for Regulatory Science Research (GCRSR) hosted the fourth Global Summit on Regulatory Science (GSRS2014) to discuss the role of genomics in regulatory decision making, with a specific emphasis on applications in food safety and medical product development. Challenges and issues were discussed in the context of developing an international consensus for objective criteria in the analysis, interpretation and reporting of genomics data with an emphasis on transparency, traceability and "fitness for purpose" for the intended application. It was recognized that there is a need for a global path in the establishment of a regulatory bioinformatics framework for the development of transparent, reliable, reproducible and auditable processes in the management of food and medical product safety risks. It was also recognized that training is an important mechanism in achieving internationally consistent outcomes. GSRS2014 provided an effective venue for regulators andresearchers to meet, discuss common issues, and develop collaborations to address the challenges posed by the application of genomics to regulatory science, with the ultimate goal of wisely integrating novel technical innovations into regulatory decision-making. Published by Elsevier Inc.

Researchers' preferences and attitudes on ethical aspects of genomics research: a comparative study between the USA and Spain.

PubMed

Ruiz-Canela, M; Valle-Mansilla, J I; Sulmasy, D P

2009-04-01

The use of human samples in genomic research has increased ethical debate about informed consent (IC) requirements and the information that subjects should receive regarding the results of the research. However, there are no quantitative data regarding researchers' attitudes about these issues. We present the results of a survey of 104 US and 100 Spanish researchers who had published genomic epidemiology studies in 61 journals during 2006. Researchers preferred a broader IC than the IC they had actually obtained in their published papers. US authors were more likely than their Spanish colleagues to support obtaining a broad IC, covering either any future research project or any projects related to a group of diseases (67.6% vs 43%; adjusted OR = 4.84, 95% CI, 2.32 to 10.12). A slight majority of researchers (55.8%) supported informing participants about individual genomic results only if the reliability and clinical validity of the information had been established. Men were more likely than women to believe that patients should be informed of research results even if these conditions were not met (adjusted OR = 2.89, 95% CI = 1.46 to 5.72). This study provides evidence of a wide range of views among scientists regarding some controversial ethical issues related to genomic research, suggesting the need for more study, debate and education. In the interim, journals might consider including the investigators' policies regarding these ethical issues in the papers they publish in the field of genomic epidemiology.

Socioscience and Ethics in Science Classrooms: Teacher Perspectives and Strategies

ERIC Educational Resources Information Center

Sadler, Troy D.; Amirshokoohi, Aidin; Kazempour, Mahsa; Allspaw, Kathleen M.

2006-01-01

This study explored teacher perspectives on the use of socioscientific issues (SSI) and on dealing with ethics in the context of science instruction. Twenty-two middle and high school science teachers from three US states participated in semi-structured interviews, and researchers employed inductive analyses to explore emergent patterns relative…

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)

Genetic technologies and ethics.

PubMed

Ardekani, Ali M

2009-01-01

In the past decade, the human genome has been completely sequenced and the knowledge from it has begun to influence the fields of biological and social sciences in fundamental ways. Identification of about 25000 genes in the human genome is expected to create great benefits in diagnosis and treatment of diseases in the coming years. However, Genetic technologies have also created many interesting and difficult ethical issues which can affect the human societies now and in the future. Application of genetic technologies in the areas of stem cells, cloning, gene therapy, genetic manipulation, gene selection, sex selection and preimplantation diagnosis has created a great potential for the human race to influence and change human life on earth as we know it today. Therefore, it is important for leaders of societies in the modern world to pay attention to the advances in genetic technologies and prepare themselves and those institutions under their command to face the challenges which these new technologies induce in the areas of ethics, law and social policies.

Emerging ethical perspectives in the clustered regularly interspaced short palindromic repeats genome-editing debate.

PubMed

Camporesi, Silvia; Cavaliere, Giulia

2016-11-01

This paper provides an overview of the ethical issues in the international clustered regularly interspaced short palindromic repeats (CRISPR) genome editing debate from March 2015 to September 2016. We present the regulatory framework for embryo research in the UK, and explain why CRISPR is not a significant break with the past. We discuss the ethical issues arising from CRISPR applications beyond human embryos, namely the use of gene drive-engineered mosquitoes to eradicate diseases, engineering nonhuman animals to harvest organs for human transplant and engineering crops. We discuss the experiments that have demonstrated the technical feasibility of cultivating embryos in vitro for up to 14 days, and possibly beyond this limit, and the ethical issues arising from the proposal to extend the limit beyond 14 days.

A Pedagogical Model for Ethical Inquiry into Socioscientific Issues In Science

NASA Astrophysics Data System (ADS)

Saunders, Kathryn J.; Rennie, Léonie J.

2013-02-01

Internationally there is concern that many science teachers do not address socioscientific issues (SSI) in their classrooms, particularly those that are controversial. However with increasingly complex, science-based dilemmas being presented to society, such as cloning, genetic screening, alternative fuels, reproductive technologies and vaccination, there is a growing call for students to be more scientifically literate and to be able to make informed decisions on issues related to these dilemmas. There have been shifts in science curricula internationally towards a focus on scientific literacy, but research indicates that many secondary science teachers lack the support and confidence to address SSI in their classrooms. This paper reports on a project that developed a pedagogical model that scaffolded teachers through a series of stages in exploring a controversial socioscientific issue with students and supported them in the use of pedagogical strategies and facilitated ways of ethical thinking. The study builds on existing frameworks of ethical thinking. It presents an argument that in today's increasingly pluralistic society, these traditional frameworks need to be extended to acknowledge other worldviews and identities. Pluralism is proposed as an additional framework of ethical thinking in the pedagogical model, from which multiple identities, including cultural, ethnic, religious and gender perspectives, can be explored.

Toward an Essential Ethic for Teaching Science in the New Millennium.

ERIC Educational Resources Information Center

Hays, Irene de la Bretonne

The purpose of this study was to identify and explore values and views that might underlie an essential ethic for teaching science in the new millennium. With such an ethic, teachers may be better able to prepare young people to form and fully participate in communities that restore and sustain Earth. Reviewed in the literature for this study were…

Integrating anticipated nutrigenomics bioscience applications with ethical aspects.

PubMed

Lévesque, Lise; Ozdemir, Vural; Gremmen, Bart; Godard, Béatrice

2008-03-01

Nutrigenomics is a subspecialty of nutrition science which aims to understand how gene-diet interactions influence individuals' response to food, disease susceptibility, and population health. Yet ethical enquiry into this field is being outpaced by nutrigenomics bioscience. The ethical issues surrounding nutrigenomics face the challenges of a rapidly evolving field which bring forward the additional dimension of crossdisciplinary integrative research between social and biomedical sciences. This article outlines the emerging nutrigenomics definitions and concepts and analyzes the existing ethics literature concerning personalized nutrition and presents "points to consider" over ethical issues regarding future nutrigenomics applications. The interest in nutrigenomics coincides with a shift in emphasis in medicine and biosciences toward prevention of future disease susceptibilities rather than treatment of already established disease. Hence, unique ethical issues emerge concerning the extent to which nutrigenomics can alter our relation to food, boundaries between health and disease, and the folklore of medical practice. Nutrigenomics can result in new social values, norms, and responsibilities for both individuals and societies. Nutrigenomics is not only another new application of "-omics" technologies in the context of gene-diet interactions. Nutrigenomics may fundamentally change the way we perceive human illness while shifting the focus and broadening the scope of health interventions from patients to healthy individuals. In resource- and time-limited healthcare settings, this creates unique ethical dilemmas and distributive justice issues. Ethical aspects of nutrigenomics applications should be addressed proactively, as this new science develops and increasingly coalesces with other applications of genomics in medicine and public health.

Social and behavioral science priorities for genomic translation.

PubMed

Koehly, Laura M; Persky, Susan; Spotts, Erica; Acca, Gillian

2018-01-29

This commentary highlights the essential role of the social and behavioral sciences for genomic translation, and discusses some priority research areas in this regard. The first area encompasses genetics of behavioral, social, and neurocognitive factors, and how integration of these relationships might impact the development of treatments and interventions. The second area includes the contributions that social and behavioral sciences make toward the informed translation of genomic developments. Further, there is a need for behavioral and social sciences to inform biomedical research for effective implementation. The third area speaks to the need for increased outreach and education efforts to improve the public's genomic literacy such that individuals and communities can make informed health-related and societal (e.g., in legal or consumer settings) decisions. Finally, there is a need to prioritize representation of diverse communities in genomics research and equity of access to genomic technologies. Examples from National Institutes of Health-based intramural and extramural research programs and initiatives are used to discuss these points. © Society of Behavioral Medicine 2018.

Human evolutionary genomics: ethical and interpretive issues.

PubMed

Vitti, Joseph J; Cho, Mildred K; Tishkoff, Sarah A; Sabeti, Pardis C

2012-03-01

Genome-wide computational studies can now identify targets of natural selection. The unique information about humans these studies reveal, and the media attention they attract, indicate the need for caution and precision in communicating results. This need is exacerbated by ways in which evolutionary and genetic considerations have been misapplied to support discriminatory policies, by persistent misconceptions of these fields and by the social sensitivity surrounding discussions of racial ancestry. We discuss the foundations, accomplishments and future directions of human evolutionary genomics, attending to ways in which the interpretation of good science can go awry, and offer suggestions for researchers to prevent misapplication of their work. Copyright © 2011 Elsevier Ltd. All rights reserved.

Ethical sensitivity intervention in science teacher education: Using computer simulations and professional codes of ethics

NASA Astrophysics Data System (ADS)

Holmes, Shawn Yvette

A simulation was created to emulate two Racial Ethical Sensitivity Test (REST) videos (Brabeck et al., 2000). The REST is a reliable assessment for ethical sensitivity to racial and gender intolerant behaviors in educational settings. Quantitative and qualitative analysis of the REST was performed using the Quick-REST survey and an interview protocol. The purpose of this study was to affect science educator ability to recognize instances of racial and gender intolerant behaviors by levering immersive qualities of simulations. The fictitious Hazelton High School virtual environment was created by the researcher and compared with the traditional REST. The study investigated whether computer simulations can influence the ethical sensitivity of preservice and inservice science teachers to racial and gender intolerant behaviors in school settings. The post-test only research design involved 32 third-year science education students enrolled in science education classes at several southeastern universities and 31 science teachers from the same locale, some of which were part of an NSF project. Participant samples were assigned to the video control group or the simulation experimental group. This resulted in four comparison group; preservice video, preservice simulation, inservice video and inservice simulation. Participants experienced two REST scenarios in the appropriate format then responded to Quick-REST survey questions for both scenarios. Additionally, the simulation groups answered in-simulation and post-simulation questions. Nonparametric analysis of the Quick-REST ascertained differences between comparison groups. Cronbach's alpha was calculated for internal consistency. The REST interview protocol was used to analyze recognition of intolerant behaviors in the in-simulation prompts. Post-simulation prompts were analyzed for emergent themes concerning effect of the simulation on responses. The preservice video group had a significantly higher mean rank score than

The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence

PubMed Central

2010-01-01

The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to “individualise” the Prize? The “HGP Nobel Prize problem” is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly. PMID:20730106

Practical Strategy on the Subject of “Science and Ethics” for Overcoming Hybrid Engineering Ethics Education

NASA Astrophysics Data System (ADS)

Yasui, Yoshiaki

The issue of economic globalization and JABEE (Japan Accreditation Board for Engineering Education) mean that education on engineering ethics has now become increasingly important for science-engineering students who will become the next generation of engineers. This is clearly indicated when engineers are made professionally responsible for various unfortunate accidents that happen during daily life in society. Learning hybrid engineering ethics is an essential part of the education of the humanities and sciences. This paper treats the contents for the subject of “Science and Ethics” drawing on several years of practice and the fruits of studying science and engineering ethics at the faculty of science-engineering in university. This paper can be considered to be a practical strategy to the formation of morality.

Tracing "Ethical Subjectivities" in Science Education: How Biology Textbooks Can Frame Ethico-Political Choices for Students

NASA Astrophysics Data System (ADS)

Bazzul, Jesse

2015-02-01

This article describes how biology textbooks can work to discursively constitute a particular kind of "ethical subjectivity." Not only do textbooks constrain the possibilities for thought and action regarding ethical issues, they also require a certain kind of "subject" to partake in ethical exercises and questions. This study looks at how ethical questions/exercises found in four Ontario textbooks require students and teachers to think and act along specific lines. These include making ethical decisions within a legal-juridical frame; deciding what kinds of research should be publically funded; optimizing personal and population health; and regulation through policy and legislation. While engaging ethical issues in these ways is useful, educators should also question the kinds of (ethical) subjectivities that are partially constituted by discourses of science education. If science education is going to address twenty-first century problems such as climate change and social inequality, educators need to address how the possibilities for ethical engagement afforded to students work to constitute specific kinds of "ethical actors."

Emerging ethical perspectives in the clustered regularly interspaced short palindromic repeats genome-editing debate

PubMed Central

Camporesi, Silvia; Cavaliere, Giulia

2016-01-01

This paper provides an overview of the ethical issues in the international clustered regularly interspaced short palindromic repeats (CRISPR) genome editing debate from March 2015 to September 2016. We present the regulatory framework for embryo research in the UK, and explain why CRISPR is not a significant break with the past. We discuss the ethical issues arising from CRISPR applications beyond human embryos, namely the use of gene drive-engineered mosquitoes to eradicate diseases, engineering nonhuman animals to harvest organs for human transplant and engineering crops. We discuss the experiments that have demonstrated the technical feasibility of cultivating embryos in vitro for up to 14 days, and possibly beyond this limit, and the ethical issues arising from the proposal to extend the limit beyond 14 days. PMID:28757883

Integrating genomics into clinical oncology: ethical and social challenges from proponents of personalized medicine.

PubMed

McGowan, Michelle L; Settersten, Richard A; Juengst, Eric T; Fishman, Jennifer R

2014-02-01

The use of molecular tools to individualize health care, predict appropriate therapies, and prevent adverse health outcomes has gained significant traction in the field of oncology under the banner of "personalized medicine" (PM). Enthusiasm for PM in oncology has been fueled by success stories of targeted treatments for a variety of cancers based on their molecular profiles. Though these are clear indications of optimism for PM, little is known about the ethical and social implications of personalized approaches in clinical oncology. The objective of this study is to assess how a range of stakeholders engaged in promoting, monitoring, and providing PM understand the challenges of integrating genomic testing and targeted therapies into clinical oncology. The study involved the analysis of in-depth interviews with 117 stakeholders whose experiences and perspectives on PM span a wide variety of institutional and professional settings. Despite their considerable enthusiasm for this shift, promoters, monitors, and providers of PM identified 4 domains that provoke heightened ethical and social concerns: (1) informed consent for cancer genomic testing, (2) privacy, confidentiality, and disclosure of genomic test results, (3) access to genomic testing and targeted therapies in oncology, and (4) the costs of scaling up pharmacogenomic testing and targeted cancer therapies. These specific concerns are not unique to oncology, or even genomics. However, those most invested in the success of PM view oncologists' responses to these challenges as precedent setting because oncology is farther along the path of clinical integration of genomic technologies than other fields of medicine. This study illustrates that the rapid emergence of PM approaches in clinical oncology provides a crucial lens for identifying and managing potential frictions and pitfalls that emerge as health care paradigms shift in these directions. © 2014 Published by Elsevier Inc.

The wisdom of nature in integrating science, ethics and the arts.

PubMed

Moser, A

2000-07-01

This paper deals with an approach to the integration of science (with technology and economics), ethics (with religion and mysticism), the arts (aesthetics) and Nature, in order to establish a world-view based on holistic, evolutionary ethics that could help with problem solving. The author suggests that this integration is possible with the aid of "Nature's wisdom" which is mirrored in the macroscopic pattern of the ecosphere. The corresponding eco-principles represent the basis for unifying soft and hard sciences resulting in "deep sciences". Deduction and induction will remain the methodology for deep sciences and will include conventional experiments and aesthetic and sentient experiences. Perception becomes the decisive factor with the senses as operators for the building of consciousness through the subconscious. In this paper, an attempt at integrating the concepts of the "true", the "right" and the "beautiful" with the aid of Nature's wisdom is explained in more detail along with consequences.

Ethical issues across different fields of forensic science.

PubMed

Yadav, Praveen Kumar

2017-01-01

Many commentators have acknowledged the fact that the usual courtroom maxim to "tell the truth, the whole truth, and nothing but the truth" is not so easy to apply in practicality. In any given situation, what does the whole truth include? In case, the whole truth includes all the possible alternatives for a given situation, what should a forensic expert witness do when an important question is not asked by the prosecutor? Does the obligation to tell the whole truth mean that all possible, all probable, all reasonably probable, all highly probable, or only the most probable alternatives must be given in response to a question? In this paper, an attempt has been made to review the various ethical issues in different fields of forensic science, forensic psychology, and forensic DNA databases. Some of the ethical issues are common to all fields whereas some are field specific. These ethical issues are mandatory for ensuring high levels of reliability and credibility of forensic scientists.

Becoming a science teacher: moving toward creolized science and an ethic of cosmopolitanism

NASA Astrophysics Data System (ADS)

Seiler, Gale

2011-03-01

Although communities and schools in North America are increasingly diverse and positioned in a global web, schools continue to adhere to Western norms and the teacher workforce remains largely White, continuing an ideology of collective sameness and conformity. Hybridization of teacher identity and of science teaching are suggested as ways to advance an ethic of solidarity through difference (cosmopolitanism) with science teaching as its vehicle. In this paper, I explore identity hybridization among non-dominant science teachers as they merge identity narratives, or who they are around science and science teaching, with who they are out-of-school. Our attention is focused on their experiences of dis-identification with science in terms of diaspora, or the sense of being taken away from what one knows and values. By generating a creolized approach to science teaching, teachers create possibilities for greater student identification with science in school, which in turn has potential for changing the face of who does science and of science itself.

[Training of managers and politicians in ethics of science and ethics of public health].

PubMed

Beaudry, Nicole

2013-01-01

First of all, I will identify the various possible objectives of training in ethics of science and health. I will then examine the institutional context in which managers and politicians act in the light of what is done in Quebec. This analysis will lead me to defend the thesis that in Quebec at least such training is necessary.

Genomic Sciences for Developmentalists: A Merge of Science and Practice

ERIC Educational Resources Information Center

Grigorenko, Elena L.

2015-01-01

The etiological forces of development have been a central question for the developmental sciences (however defined) since their crystallization as a distinct branch of scientific inquiry. Although the history of these sciences contains examples of extreme positions capitalizing on either the predominance of the genome (i.e., the accumulation of…

Ethics in exercise science research.

PubMed

Shephard, Roy J

2002-01-01

Ethical evaluation is a vital but sometimes neglected component of research policy in the exercise sciences. This article reviews some issues in human research, with particular reference to studies undertaken by the exercise scientist. The typical composition and functions of the research review committee are examined in the context of individual and institutional ethical norms. In multicentre trials, there are often problems in coordinating ethical approval between institutions. On-going monitoring of research may have value in the detection of fraud. A reduction in the secrecy of committee proceedings would allow a closer auditing of the research review process. Authors need to give more thought to developing appropriate research questions. Scarce resources may be wasted because of inappropriate study design or an inadequate statistical analysis of the results. The costs of any proposed investigation must be weighed carefully against possible benefits. Confidentiality is particularly important when collecting data at the worksite or over the internet. Informed consent should be based on a full disclosure of risks; the participant should be competent to understand the nature and magnitude of these risks, and undue pressure to participate in an experiment must be avoided. The opposition to placebo trials expressed in the Declaration of Helsinki requires careful consideration of the use of control groups, since regular exercise is known to benefit health. If research is conducted in under-developed societies, the standards of treatment of the participants should match those expected in developed societies. The publication of findings must be fair and well balanced; examples of fraud and misconduct continue to be reported. Some journals apparently still publish papers, even if they have not received an initial institutional review. Editors should restore meaning to the word 'author', avoid the bias to a publication of 'positive' results, limit the impact of

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

NASA Astrophysics Data System (ADS)

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

2008-06-01

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

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

PubMed

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

2008-06-01

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

The Ethics of Big Data and Nursing Science.

PubMed

Milton, Constance L

2017-10-01

Big data is a scientific, social, and technological trend referring to the process and size of datasets available for analysis. Ethical implications arise as healthcare disciplines, including nursing, struggle over questions of informed consent, privacy, ownership of data, and its possible use in epistemology. The author offers straight-thinking possibilities for the use of big data in nursing science.

The PiGeOn project: protocol for a longitudinal study examining psychosocial, behavioural and ethical issues and outcomes in cancer tumour genomic profiling.

PubMed

Best, Megan; Newson, Ainsley J; Meiser, Bettina; Juraskova, Ilona; Goldstein, David; Tucker, Kathy; Ballinger, Mandy L; Hess, Dominique; Schlub, Timothy E; Biesecker, Barbara; Vines, Richard; Vines, Kate; Thomas, David; Young, Mary-Anne; Savard, Jacqueline; Jacobs, Chris; Butow, Phyllis

2018-04-05

Genomic sequencing in cancer (both tumour and germline), and development of therapies targeted to tumour genetic status, hold great promise for improvement of patient outcomes. However, the imminent introduction of genomics into clinical practice calls for better understanding of how patients value, experience, and cope with this novel technology and its often complex results. Here we describe a protocol for a novel mixed-methods, prospective study (PiGeOn) that aims to examine patients' psychosocial, cognitive, affective and behavioural responses to tumour genomic profiling and to integrate a parallel critical ethical analysis of returning results. This is a cohort sub-study of a parent tumour genomic profiling programme enrolling patients with advanced cancer. One thousand patients will be recruited for the parent study in Sydney, Australia from 2016 to 2019. They will be asked to complete surveys at baseline, three, and five months. Primary outcomes are: knowledge, preferences, attitudes and values. A purposively sampled subset of patients will be asked to participate in three semi-structured interviews (at each time point) to provide deeper data interpretation. Relevant ethical themes will be critically analysed to iteratively develop or refine normative ethical concepts or frameworks currently used in the return of genetic information. This will be the first Australian study to collect longitudinal data on cancer patients' experience of tumour genomic profiling. Findings will be used to inform ongoing ethical debates on issues such as how to effectively obtain informed consent for genomic profiling return results, distinguish between research and clinical practice and manage patient expectations. The combination of quantitative and qualitative methods will provide comprehensive and critical data on how patients cope with 'actionable' and 'non-actionable' results. This information is needed to ensure that when tumour genomic profiling becomes part of routine

The Tower Builders: A Consideration of STEM, STSE and Ethics in Science Education

ERIC Educational Resources Information Center

Steele, Astrid; Brew, Christine R.; Beatty, Brenda R.

2012-01-01

The call for the integration of ethical considerations in the teaching of science is now firmly on the agenda. Taking as illustrative a science lesson in a pre-service teacher class, the authors consider the roles of STSE (science, technology, society and environment) and the increasingly influential heavily funded STEM (science, technology,…

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

Views of American OB/GYNs on the ethics of prenatal whole-genome sequencing.

PubMed

Bayefsky, Michelle J; White, Amina; Wakim, Paul; Hull, Sara Chandros; Wasserman, David; Chen, Stephanie; Berkman, Benjamin E

2016-12-01

Given public demand for genetic information, the potential to perform prenatal whole-genome sequencing (PWGS) non-invasively in the future, and decreasing costs of whole-genome sequencing, it is likely that OB/GYN practice will include PWGS. The goal of this project was to explore OB/GYNs' views on the ethical issues surrounding PWGS and their preparedness for counseling patients on its use. A national survey was administered to 2500 members of American Congress of Obstetricians and Gynecologists. A total of 1114 respondents completed the survey (response rate = 45%). OB/GYNs are most concerned with ordering non-medical fetal genetic information, are worried about increasing parental anxiety, and feel it is appropriate to be directive when counseling parents about PWGS. Furthermore, most OB/GYNs have limited knowledge of genetics, rely heavily on genetic counselors and would like more guidance regarding the clinical adoption of PWGS. OB/GYNs do not completely accept or reject PWGS, but a substantial number have significant ethical and practical concerns. They are most concerned with issues that will directly affect their practices and interactions with patients, such as increasing parental anxiety and costs of care. Professional guidance would be instrumental in directing the adoption of PWGS and alleviating the ethical burden posed by PWGS on individual OB/GYNs. Published 2016. This article is a U.S. Government work and is in the public domain in the USA. Published 2016. This article is a U.S. Government work and is in the public domain in the USA.

Science ethics education part I. Perception and attitude toward scientific fraud among medical researchers.

PubMed

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

2011-01-01

To assess the knowledge of basic principles of responsible conduct of research and attitude toward the violations of good scientific practice among graduate biomedical students. A total of 361 subjects entered the study. The study group consisted mainly of graduate students of Medicine (85%), and other biomedical sciences (15%). Most participants were on PhD training or on postdoctoral training. A specially designed anonymous voluntary multiple-choice questionnaire was distributed to them. The questionnaire consisted of 43 questions divided in 7 parts, each aimed to assess the participants' previous knowledge and attitudes toward ethical principles of science and the main types of scientific fraud, falsification, fabrication of data, plagiarism, and false authorship. Although they considered themselves as insufficiently educated on science ethics, almost all participants recognized all types of scientific fraud, qualified these issues as highly unethical, and expressed strong negative attitude toward them. Despite that, only about half of the participants thought that superiors-violators of high ethical standards of science deserve severe punishment, and even fewer declared that they would whistle blow. These percentages were much greater in cases when the students had personally been plagiarized. Our participants recognized all types of scientific fraud as violation of ethical standards of science, expressed strong negative attitude against fraud, and believed that they would never commit fraud, thus indicating their own high moral sense. However, the unwillingness to whistle blow and to punish adequately the violators might be characterized as opportunistic behavior.

Facilitating ethical reflection among scientists using the ethical matrix.

PubMed

Jensen, Karsten Klint; Forsberg, Ellen-Marie; Gamborg, Christian; Millar, Kate; Sandøe, Peter

2011-09-01

Several studies have indicated that scientists are likely to have an outlook on both facts and values that are different to that of lay people in important ways. This is one significant reason it is currently believed that in order for scientists to exercise a reliable ethical reflection about their research it is necessary for them to engage in dialogue with other stakeholders. This paper reports on an exercise to encourage a group of scientists to reflect on ethical issues without the presence of external stakeholders. It reports on the use of a reflection process with scientists working in the area of animal disease genomics (mainly drawn from the EADGENE EC Network of Excellence). This reflection process was facilitated by using an ethical engagement framework, a modified version of the Ethical Matrix. As judged by two criteria, a qualitative assessment of the outcomes and the participants' own assessment of the process, this independent reflective exercise was deemed to be successful. The discussions demonstrated a high level of complexity and depth, with participants demonstrating a clear perception of uncertainties and the context in which their research operates. Reflection on stakeholder views and values appeared to be embedded within the discussions. The finding from this exercise seems to indicate that even without the involvement of the wider stakeholder community, valuable reflection and worthwhile discourse can be generated from ethical reflection processes involving only scienitific project partners. Hence, the previous assumption that direct stakeholder engagement is necessary for ethical reflection does not appear to hold true in all cases; however, other reasons for involving a broad group of stakeholders relating to governance and social accountability of science remain.

Ethics Issues in Academic-Industry Relationships in the Life Sciences: The Continuing Debate.

ERIC Educational Resources Information Center

Blumenthal, David

1996-01-01

Reviews the status of academic-industry relationships (AIRs) in the life sciences from both ethical and empirical perspectives, identifying ethical issues that have been resolved and those that must still be debated. Concludes that more research is needed on both the positive and negative effects of AIRs, especially in the development of better…

Scientific Ethics: A New Approach.

PubMed

Menapace, Marcello

2018-06-04

Science is an activity of the human intellect and as such has ethical implications that should be reviewed and taken into account. Although science and ethics have conventionally been considered different, it is herewith proposed that they are essentially similar. The proposal set henceforth is to create a new ethics rooted in science: scientific ethics. Science has firm axiological foundations and searches for truth (as a value, axiology) and knowledge (epistemology). Hence, science cannot be value neutral. Looking at standard scientific principles, it is possible to construct a scientific ethic (that is, an ethical framework based on scientific methods and rules), which can be applied to all sciences. These intellectual standards include the search for truth (honesty and its derivatives), human dignity (and by reflection the dignity of all animals) and respect for life. Through these it is thence achievable to draft a foundation of a ethics based purely on science and applicable beyond the confines of science. A few applications of these will be presented. Scientific ethics can have vast applications in other fields even in non scientific ones.

The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer.

PubMed

Best, Megan; Newson, Ainsley J; Meiser, Bettina; Juraskova, Ilona; Goldstein, David; Tucker, Kathy; Ballinger, Mandy L; Hess, Dominique; Schlub, Timothy E; Biesecker, Barbara; Vines, Richard; Vines, Kate; Thomas, David; Young, Mary-Anne; Savard, Jacqueline; Jacobs, Chris; Butow, Phyllis

2018-04-23

Advances in genomics offer promise for earlier detection or prevention of cancer, by personalisation of medical care tailored to an individual's genomic risk status. However genome sequencing can generate an unprecedented volume of results for the patient to process with potential implications for their families and reproductive choices. This paper describes a protocol for a study (PiGeOn) that aims to explore how patients and their blood relatives experience germline genomic sequencing, to help guide the appropriate future implementation of genome sequencing into routine clinical practice. We have designed a mixed-methods, prospective, cohort sub-study of a germline genomic sequencing study that targets adults with cancer suggestive of a genetic aetiology. One thousand probands and 2000 of their blood relatives will undergo germline genomic sequencing as part of the parent study in Sydney, Australia between 2016 and 2020. Test results are expected within12-15 months of recruitment. For the PiGeOn sub-study, participants will be invited to complete surveys at baseline, three months and twelve months after baseline using self-administered questionnaires, to assess the experience of long waits for results (despite being informed that results may not be returned) and expectations of receiving them. Subsets of both probands and blood relatives will be purposively sampled and invited to participate in three semi-structured qualitative interviews (at baseline and each follow-up) to triangulate the data. Ethical themes identified in the data will be used to inform critical revisions of normative ethical concepts or frameworks. This will be one of the first studies internationally to follow the psychosocial impact on probands and their blood relatives who undergo germline genome sequencing, over time. Study results will inform ongoing ethical debates on issues such as informed consent for genomic sequencing, and informing participants and their relatives of specific

The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing.

PubMed

Hurlimann, Thierry; Jaitovich Groisman, Iris; Godard, Béatrice

2017-04-11

The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders' perspectives on the use of such technologies. Within the framework of a research project entitled "Personalized medicine in the treatment of epilepsy", we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists from around the world to share their views and practices regarding the use of whole-genome sequencing in clinical neurology and its associated ethics. We discuss herein the compelling scientific and ethical reasons that led us to attempt to recruit neurologists worldwide, despite the lack, in many low- or middle-income countries, of access to genomic technologies. Recruitment procedures and their results are presented and discussed, as well as the barriers we faced. We conclude that inclusive recruitment remains a challenging, albeit necessary and legitimate, endeavour.

Facilitating awareness of philosophy of science, ethics and communication through manual skills training in undergraduate education.

PubMed

Kordahl, Hilde Lund; Fougner, Marit

2017-03-01

Professional health science education includes a common theoretical basis concerning the theory of science, ethics and communication. Former evaluations by first-year students of the bachelor physiotherapy program at Oslo and Akershus University College of Applied Sciences (HiOA) show that they find it hard to understand the relation between these particular topics and future professional practice. This challenge is the starting point for a pedagogical development project that aims to develop learning contexts that highlight the relevance of these theoretical concepts. The aim of the study is to explore and present findings on the value of using Sykegrep manual skills classes as an arena in which students can be encouraged to think about, reflect on and appreciate the role and value of the philosophical perspectives that inform their practice and contributes to practise knowledge. A qualitative study with data collection through focus groups was performed and analyzed using thematic content analysis. Eighteen first-year undergraduate students, who had completed the manual skills course, participated in the study. Analysis of the data yielded three categories of findings that can be associated with aspects of philosophy of science, ethics and communication. These are as follows: 1) preconceived understanding of physiotherapy; 2) body knowledge perspectives; and 3) relational aspects of interactions. Undergraduate students' understanding and experience of philosophy of science, ethics and communication may be facilitated by peer collaboration, reflection on intimacy and touch and the ethical aspects of interaction during manual skills training. Practical classes in Sykegrep provide a basis for students' discussions about the body as well as their experiences with the body in the collaborative learning context. The students' reflections on their expectations of manual skills in physiotherapy and experiences of touch and being touched can facilitate an awareness of

Animal Models in Forensic Science Research: Justified Use or Ethical Exploitation?

PubMed

Mole, Calvin Gerald; Heyns, Marise

2018-05-01

A moral dilemma exists in biomedical research relating to the use of animal or human tissue when conducting scientific research. In human ethics, researchers need to justify why the use of humans is necessary should suitable models exist. Conversely, in animal ethics, a researcher must justify why research cannot be carried out on suitable alternatives. In the case of medical procedures or therapeutics testing, the use of animal models is often justified. However, in forensic research, the justification may be less evident, particularly when research involves the infliction of trauma on living animals. To determine how the forensic science community is dealing with this dilemma, a review of literature within major forensic science journals was conducted. The frequency and trends of the use of animals in forensic science research was investigated for the period 1 January 2012-31 December 2016. The review revealed 204 original articles utilizing 5050 animals in various forms as analogues for human tissue. The most common specimens utilized were various species of rats (35.3%), pigs (29.3%), mice (17.7%), and rabbits (8.2%) although different specimens were favored in different study themes. The majority of studies (58%) were conducted on post-mortem specimens. It is, however, evident that more needs to be done to uphold the basic ethical principles of reduction, refinement and replacement in the use of animals for research purposes.

Recent Studies of Research Ethics at the National Academy of Sciences

NASA Astrophysics Data System (ADS)

Bissell, Richard

2012-01-01

Over the last few years, the National Academy of Sciences/National Research Council has been asked to revisit some of the core ethical issues for science that had not been properly explored since the 1990s. Some of the interest in this area related to the impact of technology changes in the sciences (e.g., management of massive data bases) and some to institutional changes (e.g., globalization of research teams, emergence of new scientific powers abroad, and new models in the publishing industry). As a result, a series of authoritative reports from the Academies’ Committee on Science, Engineering and Public Policy have been developed by expert committees and published - the third edition of On Being A Scientist (2009), a report on Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age (2009), and underway there is a new edition of Responsible Science: Ensuring the Integrity of the Research Process (first published in 1992, forthcoming in 2012). It is relevant in this age of global science that the latest edition of OBAS has been translated into multiple foreign languages, and the InterAcademy Council has launched its own project on research ethics with a report due from this multi-science academy body in the 2012-2013 period. Some of the principal findings and issues raised in these reports will be presented by Richard E. Bissell, Executive Director for Policy and Global Affairs at the National Academy of Sciences.

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

PubMed Central

Brall, Caroline; Maeckelberghe, Els; Porz, Rouven; Makhoul, Jihad; Schröder-Bäck, Peter

2017-01-01

Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research. PMID:28288472

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources.

PubMed

Brall, Caroline; Maeckelberghe, Els; Porz, Rouven; Makhoul, Jihad; Schröder-Bäck, Peter

2017-01-01

Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research. © 2017 S. Karger AG, Basel.

Scientific misconduct and science ethics: a case study based approach.

PubMed

Consoli, Luca

2006-07-01

The Schön misconduct case has been widely publicized in the media and has sparked intense discussions within and outside the scientific community about general issues of science ethics. This paper analyses the Report of the official Committee charged with the investigation in order to show that what at first seems to be a quite uncontroversial case, turns out to be an accumulation of many interesting and non-trivial questions (of both ethical and philosophical interest). In particular, the paper intends to show that daily scientific practices are structurally permeated by chronic problems; this has serious consequences for how practicing scientists assess their work in general, and scientific misconduct in particular. A philosophical approach is proposed that sees scientific method and scientific ethics as inextricably interwoven. Furthermore, the paper intends to show that the definition of co-authorship that the members of the Committee use, although perhaps clear in theory, proves highly problematic in practice and raises more questions that it answers. A final plea is made for a more self-reflecting attitude of scientists as far as the moral and methodological profile of science is concerned as a key element for improving not only their scientific achievements, but also their assessment of problematic cases.

Genomic medicine: health care issues and the unresolved ethical and social dilemmas.

PubMed

Idemyor, Vincent

2014-01-01

Our perception of the mechanism by which single genes can cause disease is evolving. This has led to the understanding of the pathophysiological basis of common diseases. Genomic Medicine continues to contribute to the understanding of the molecular basis of disease. Medicine has strived to achieve the goal of tailoring interventions to individual variations in risk and treatment response and advances in medical genomics will facilitate this process. Relevant to present-day practice is the use of genomic information to classify individuals according to disease susceptibility or expected responsiveness to a pharmacologic treatment and to provide targeted interventions. By investigating the genetic profile of individuals, medical professionals are able to select patients and use the information obtained to plan out a course of treatment that is much more in step with the way their body works. However, society is concerned about the effect genetic knowledge will have on ethnic or racial groups. Currently, the Health Insurance Portability and Accountability Act prohibits discrimination based on genetics. There is a need to increase the understanding of the social and ethical challenges that genomics information may pose to clinicians and scientists. This review is not meant to be exhaustive; rather, clinically relevant examples are used to illustrate how genomic medicine can facilitate the provision of molecular diagnostic methods that improve drug therapy. Finally, the rapid pace of change in genomics may likely make my conclusions today obsolete tomorrow.

Compliance with National Ethics Requirements for Human-Subject Research in Non-biomedical Sciences in Brazil: A Changing Culture?

PubMed

de Albuquerque Rocha, Karina; Vasconcelos, Sonia M R

2018-02-06

Ethics regulation for human-subject research (HSR) has been established for about 20 years in Brazil. However, compliance with this regulation is controversial for non-biomedical sciences, particularly for human and social sciences (HSS), the source of a recent debate at the National Commission for Research Ethics. We hypothesized that for these fields, formal requirements for compliance with HSR regulation in graduate programs, responsible for the greatest share of Brazilian science, would be small in number. We analyzed institutional documents (collected from June 2014 to May 2015) from 171 graduate programs at six prestigious Brazilian universities in São Paulo and Rio de Janeiro, the states that fund most of the science conducted in Brazil. Among these programs, 149 were in HSS. The results suggest that non-compliance with standard regulation seems to be the rule in most of these programs. The data may reflect not only a resistance from scientists in these fields to comply with standard regulations for ethics in HSR but also a disciplinary tradition that seems prevalent when it comes to research ethics in HSR. However, recent encounters between Brazilian biomedical and non-biomedical scientists for debates over ethics in HSR point to a changing culture in the approach to research ethics in the country.

Exploring the post-genomic world: differing explanatory and manipulatory functions of post-genomic sciences.

PubMed

Holmes, Christina; Carlson, Siobhan M; McDonald, Fiona; Jones, Mavis; Graham, Janice

2016-01-02

Richard Lewontin proposed that the ability of a scientific field to create a narrative for public understanding garners it social relevance. This article applies Lewontin's conceptual framework of the functions of science (manipulatory and explanatory) to compare and explain the current differences in perceived societal relevance of genetics/genomics and proteomics. We provide three examples to illustrate the social relevance and strong cultural narrative of genetics/genomics for which no counterpart exists for proteomics. We argue that the major difference between genetics/genomics and proteomics is that genomics has a strong explanatory function, due to the strong cultural narrative of heredity. Based on qualitative interviews and observations of proteomics conferences, we suggest that the nature of proteins, lack of public understanding, and theoretical complexity exacerbates this difference for proteomics. Lewontin's framework suggests that social scientists may find that omics sciences affect social relations in different ways than past analyses of genetics.

The Human Genome Project: big science transforms biology and medicine.

PubMed

Hood, Leroy; Rowen, Lee

2013-01-01

The Human Genome Project has transformed biology through its integrated big science approach to deciphering a reference human genome sequence along with the complete sequences of key model organisms. The project exemplifies the power, necessity and success of large, integrated, cross-disciplinary efforts - so-called 'big science' - directed towards complex major objectives. In this article, we discuss the ways in which this ambitious endeavor led to the development of novel technologies and analytical tools, and how it brought the expertise of engineers, computer scientists and mathematicians together with biologists. It established an open approach to data sharing and open-source software, thereby making the data resulting from the project accessible to all. The genome sequences of microbes, plants and animals have revolutionized many fields of science, including microbiology, virology, infectious disease and plant biology. Moreover, deeper knowledge of human sequence variation has begun to alter the practice of medicine. The Human Genome Project has inspired subsequent large-scale data acquisition initiatives such as the International HapMap Project, 1000 Genomes, and The Cancer Genome Atlas, as well as the recently announced Human Brain Project and the emerging Human Proteome Project.

A Qualitative Evaluation of Ethics Educational Program in Health Science.

PubMed

Ekmekci, Perihan Elif; Oral, Murat; Yurdakul, Eray Serdar

2015-06-01

This paper originates from a panel discussion on the evaluation of "Ethics Educational Program in Health Sciences" held during the IAEE Conference 2014 Ankara, Turkey. The participants of the panel had consultations to solidify the concepts about the topic. The qualitative data out of these antecedent discussions became mature with the contributions in the panel. The outcome of this qualitative study mainly focuses on the examples of two current curricula; one from PhD on History of Medicine and Medical Ethics, the other one from an elective course on medical ethics as a part of a PhD program on Pharmacy Management and History, followed by the major challenges the trainees face during their education, their expectations and whether the program was satisfactory, the aspects of the programs which are prone to improvement and their overall evaluations of the programs.

Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems.

PubMed

Leonelli, Sabina

2016-12-28

The distributed and global nature of data science creates challenges for evaluating the quality, import and potential impact of the data and knowledge claims being produced. This has significant consequences for the management and oversight of responsibilities and accountabilities in data science. In particular, it makes it difficult to determine who is responsible for what output, and how such responsibilities relate to each other; what 'participation' means and which accountabilities it involves, with regard to data ownership, donation and sharing as well as data analysis, re-use and authorship; and whether the trust placed on automated tools for data mining and interpretation is warranted (especially as data processing strategies and tools are often developed separately from the situations of data use where ethical concerns typically emerge). To address these challenges, this paper advocates a participative, reflexive management of data practices. Regulatory structures should encourage data scientists to examine the historical lineages and ethical implications of their work at regular intervals. They should also foster awareness of the multitude of skills and perspectives involved in data science, highlighting how each perspective is partial and in need of confrontation with others. This approach has the potential to improve not only the ethical oversight for data science initiatives, but also the quality and reliability of research outputs.This article is part of the themed issue 'The ethical impact of data science'. © 2015 The Authors.

Professional Ethics in Astronomy: The AAS Ethics Statement

NASA Astrophysics Data System (ADS)

Marvel, Kevin B.

2013-01-01

It is fundamental to the advancement of science that practicing scientists adhere to a consistent set of professional ethical principles. Recent violations of these principles have led a decreased trust in the process of science and scientific results. Although astronomy is less in the spotlight on these issues than medical science or climate change research, it is still incumbent on the field to follow sound scientific process guided by basic ethical guidelines. The American Astronomical Society, developed a set of such guidelines in 2010. This contribution summarizes the motivation and process by which the AAS Ethics Statement was produced.

Understanding bureaucracy in health science ethics: toward a better institutional review board.

PubMed

Bozeman, Barry; Slade, Catherine; Hirsch, Paul

2009-09-01

Research involving human participants continues to grow dramatically, fueled by advances in medical technology, globalization of research, and financial and professional incentives. This creates increasing opportunities for ethical errors with devastating effects. The typical professional and policy response to calamities involving human participants in research is to layer on more ethical guidelines or strictures. We used a recent case-the Johns Hopkins University/Kennedy Kreiger Institute Lead Paint Study-to examine lessons learned since the Tuskegee Syphilis Study about the role of institutionalized science ethics in the protection of human participants in research. We address the role of the institutional review board as the focal point for policy attention.

Understanding Bureaucracy in Health Science Ethics: Toward a Better Institutional Review Board

PubMed Central

Bozeman, Barry; Hirsch, Paul

2009-01-01

Research involving human participants continues to grow dramatically, fueled by advances in medical technology, globalization of research, and financial and professional incentives. This creates increasing opportunities for ethical errors with devastating effects. The typical professional and policy response to calamities involving human participants in research is to layer on more ethical guidelines or strictures. We used a recent case—the Johns Hopkins University/Kennedy Kreiger Institute Lead Paint Study—to examine lessons learned since the Tuskegee Syphilis Study about the role of institutionalized science ethics in the protection of human participants in research. We address the role of the institutional review board as the focal point for policy attention. PMID:19608947

Exploring the post-genomic world: differing explanatory and manipulatory functions of post-genomic sciences

PubMed Central

Holmes, Christina; Carlson, Siobhan M.; McDonald, Fiona; Jones, Mavis; Graham, Janice

2016-01-01

Richard Lewontin proposed that the ability of a scientific field to create a narrative for public understanding garners it social relevance. This article applies Lewontin's conceptual framework of the functions of science (manipulatory and explanatory) to compare and explain the current differences in perceived societal relevance of genetics/genomics and proteomics. We provide three examples to illustrate the social relevance and strong cultural narrative of genetics/genomics for which no counterpart exists for proteomics. We argue that the major difference between genetics/genomics and proteomics is that genomics has a strong explanatory function, due to the strong cultural narrative of heredity. Based on qualitative interviews and observations of proteomics conferences, we suggest that the nature of proteins, lack of public understanding, and theoretical complexity exacerbates this difference for proteomics. Lewontin's framework suggests that social scientists may find that omics sciences affect social relations in different ways than past analyses of genetics. PMID:27134568

Psychotherapy is an ethical endeavor: Balancing science and humanism in clinical practice.

PubMed

Allen, Jon G

2013-01-01

The author proposes that psychotherapy is best grounded in scienceinformed humanism and, more specifically, that psychotherapists at least implicitly promote ethical, moral--and indeed, virtuous--behavior. In doing so, therapists are challenged continually to engage in making evaluative moral judgments without being judgmental. He contends that psychotherapists, and psychologists especially, are overly reliant on science and might benefit from being more explicit in their ethical endeavors by being better informed about the illuminating philosophical literature on ethics. He highlights the concept of mentalizing, that is, attentiveness to mental states in self and others, such as needs, feelings, and thoughts. He proposes that mentalizing in the context of attachment relationships is common to all psychotherapies, and that this common process is best understood conjointly from the perspectives of developmental psychology and ethics. The author defends the thesis that employing psychotherapy to promote ethical, moral, and virtuous functioning can be justified on scientific grounds insofar as this functioning is conducive to health.

Educational technologies and the teaching of ethics in science and engineering.

PubMed

Loui, Michael C

2005-07-01

To support the teaching of ethics in science and engineering, educational technologies offer a variety of functions: communication between students and instructors, production of documents, distribution of documents, archiving of class sessions, and access to remote resources. Instructors may choose to use these functions of the technologies at different levels of intensity, to support a variety of pedagogies, consistent with accepted good practices. Good pedagogical practices are illustrated in this paper with four examples of uses of educational technologies in the teaching of ethics in science and engineering. Educational technologies impose costs for the purchase of hardware, licensing of software, hiring of support personnel, and training of instructors. Whether the benefits justify these costs is an unsettled question. While many researchers are studying the possible benefits of educational technologies, all instructors should assess the effectiveness of their practices.

Genomic science provides new insights into the biology of forest trees

Treesearch

Andrew Groover

2015-01-01

Forest biology is undergoing a fundamental change fostered by the application of genomic science to longstanding questions surrounding the evolution, adaptive traits, development, and environmental interactions of tree species. Genomic science has made major technical leaps in recent years, most notably with the advent of 'next generation sequencing' but...

Ethical, legal, and social issues related to genomics and cancer research: the impending crisis.

PubMed

Ellerin, Bruce E; Schneider, Robert J; Stern, Arnold; Toniolo, Paolo G; Formenti, Silvia C

2005-11-01

Cancer research is a multibillion-dollar enterprise validated by the clinical trial process and increasingly defined by genomics. The continued success of the endeavor depends on the smooth functioning of the clinical trial system, which in turn depends on human subject participation. Yet human subject participation can exist only in an atmosphere of trust between research participants and research sponsors, and the advent of genomics has raised a multitude of ethical, legal, and social issues that threaten this trust. The authors examine 6 of these issues: (1) informed consent; (2) privacy, confidentiality, and family disclosure dilemmas; (3) property rights in genomic discoveries; (4) individual and institutional conflicts of interest; (5) insurance and employment issues; and (6) litigation under the federal False Claims Act. The authors conclude that failure to resolve these issues may lead to a sufficient impairment of trust in genomics-based clinical trials on the part of potential research participants that the clinical trial system may implode for lack of willing participants, thus threatening the future of cancer research.

Genome Science and Personalized Cancer Treatment

ScienceCinema

Gray, Joe

2017-12-09

August 4, 2009 Berkeley Lab lecture: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

Inclusion of policies on ethical standards in animal experiments in biomedical science journals.

PubMed

Rands, Sean A

2011-11-01

Most published biomedical research involving animal models is evaluated carefully to ensure that appropriate ethical standards are met. In the current study, 500 journals randomly selected from MedLine were assessed for whether they presented animal research. Of the 138 journals that did, the instructions to authors of 85 (61.6%) included a requirement for author assurance of adherence to ethical standards during experiments involving animals. In comparison to a wider range of biologic journals, biomedical science journals were more likely to have some sort of ethical policy concerning the reporting and presentation of animal experiments.

The current state of implementation science in genomic medicine: opportunities for improvement.

PubMed

Roberts, Megan C; Kennedy, Amy E; Chambers, David A; Khoury, Muin J

2017-08-01

The objective of this study was to identify trends and gaps in the field of implementation science in genomic medicine. We conducted a literature review using the Centers for Disease Control and Prevention's Public Health Genomics Knowledge Base to examine the current literature in the field of implementation science in genomic medicine. We selected original research articles based on specific inclusion criteria and then abstracted information about study design, genomic medicine, and implementation outcomes. Data were aggregated, and trends and gaps in the literature were discussed. Our final review encompassed 283 articles published in 2014, the majority of which described uptake (35.7%, n = 101) and preferences (36.4%, n = 103) regarding genomic technologies, particularly oncology (35%, n = 99). Key study design elements, such as racial/ethnic composition of study populations, were underreported in studies. Few studies incorporated implementation science theoretical frameworks, sustainability measures, or capacity building. Although genomic discovery provides the potential for population health benefit, the current knowledge base around implementation to turn this promise into a reality is severely limited. Current gaps in the literature demonstrate a need to apply implementation science principles to genomic medicine in order to deliver on the promise of precision medicine.Genet Med advance online publication 12 January 2017.

Public attitudes to genomic science: an experiment in information provision.

PubMed

Sturgis, Patrick; Brunton-Smith, Ian; Fife-Schaw, Chris

2010-03-01

We use an experimental panel study design to investigate the effect of providing "value-neutral" information about genomic science in the form of a short film to a random sample of the British public. We find little evidence of attitude change as a function of information provision. However, our results show that information provision significantly increased dropout from the study amongst less educated respondents. Our findings have implications both for our understanding of the knowledge-attitude relationship in public opinion toward genomic science and for science communication more generally.

Accessible Genetics Research Ethics Education (AGREE): A Web-Based Program for IRBs and Investigators

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

Sugarman, Jeremy; Lee, Linda

The primary objective of this project was to design and evaluate a series of web-based educational modules on genetics research ethics for members of Institutional Review Boards and investigators to facilitate the development and oversight of important research that is sensitive to the relevant ethical, legal and social issues. After a needs assessment was completed in March of 2003, five online educational modules on the ethics of research in genetics were developed, tested, and made available through a host website for AGREE: http://agree.mc.duke.edu/index.html. The 5 modules are: (1) Ethics and Genetics Research in Populations; (2) Ethics in Behavioral Genetics Research;more » (3) Ethical Issues in Research on Gene-Environment Interactions; (4) Ethical Issues in Reproductive Genetics Research; and (5) Ethical Issues in Diagnostic and Therapeutic Research. The development process adopted a tested approach used at Duke University School of Medicine in providing education for researchers and IRB members, supplementing it with expert input and a rigorous evaluation. The host website also included a description of the AGREE; short bios on the AGREE Investigators and Expert Advisory Panel; streaming media of selected presentations from a conference, Working at the Frontiers of Law and Science: Applications of the Human Genome held October 2-3, 2003, at the University of North Carolina at Chapel Hill; and links to online resources in genomics, research ethics, ethics in genomics research, and related organizations. The web site was active beginning with the posting of the first module and was maintained throughout the project period. We have also secured agreement to keep the site active an additional year beyond the project period. AGREE met its primary objective of creating web-based educational modules related to the ethical issues in genetics research. The modules have been disseminated widely. While it is clearly easier to judge the quality of the educational

Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems

PubMed Central

2016-01-01

The distributed and global nature of data science creates challenges for evaluating the quality, import and potential impact of the data and knowledge claims being produced. This has significant consequences for the management and oversight of responsibilities and accountabilities in data science. In particular, it makes it difficult to determine who is responsible for what output, and how such responsibilities relate to each other; what ‘participation’ means and which accountabilities it involves, with regard to data ownership, donation and sharing as well as data analysis, re-use and authorship; and whether the trust placed on automated tools for data mining and interpretation is warranted (especially as data processing strategies and tools are often developed separately from the situations of data use where ethical concerns typically emerge). To address these challenges, this paper advocates a participative, reflexive management of data practices. Regulatory structures should encourage data scientists to examine the historical lineages and ethical implications of their work at regular intervals. They should also foster awareness of the multitude of skills and perspectives involved in data science, highlighting how each perspective is partial and in need of confrontation with others. This approach has the potential to improve not only the ethical oversight for data science initiatives, but also the quality and reliability of research outputs. This article is part of the themed issue ‘The ethical impact of data science’. PMID:28336799

The case for mandatory inclusion of ethics within the zoological sciences curriculum.

PubMed

Buckeridge, John S

2006-03-01

Traditionally, undergraduate science curricula include little or no "ethics," either as theory or practice. However, zoologists are currently enjoying considerable media exposure: some of it positive (as in conservation practice), but more often negative (pertaining to issues such as the use of animals for testing of drugs, and genetic engineering). More than ever before, zoologists are being asked to make value judgments, and many of these involve moral assessment; if we accept that zoologists (along with other scientists) are professionals, then we must accept that they are responsible for any decisions they make, and it then follows that they are accountable, which can have serious ramifications in cases of malpractice. Ethics involves the application of morality in a professional setting. In light of this, teaching ethics is mandatory in degree programs such as engineering and medicine. This paper contends that a key output of zoological education is the undergraduate who is cognizant of the ethical framework and constructs within which he/she must function. The paper concludes with comment on the nature and style of delivery of ethics education.

An integrative model for in-silico clinical-genomics discovery science.

PubMed

Lussier, Yves A; Sarkar, Indra Nell; Cantor, Michael

2002-01-01

Human Genome discovery research has set the pace for Post-Genomic Discovery Research. While post-genomic fields focused at the molecular level are intensively pursued, little effort is being deployed in the later stages of molecular medicine discovery research, such as clinical-genomics. The objective of this study is to demonstrate the relevance and significance of integrating mainstream clinical informatics decision support systems to current bioinformatics genomic discovery science. This paper is a feasibility study of an original model enabling novel "in-silico" clinical-genomic discovery science and that demonstrates its feasibility. This model is designed to mediate queries among clinical and genomic knowledge bases with relevant bioinformatic analytic tools (e.g. gene clustering). Briefly, trait-disease-gene relationships were successfully illustrated using QMR, OMIM, SNOMED-RT, GeneCluster and TreeView. The analyses were visualized as two-dimensional dendrograms of clinical observations clustered around genes. To our knowledge, this is the first study using knowledge bases of clinical decision support systems for genomic discovery. Although this study is a proof of principle, it provides a framework for the development of clinical decision-support-system driven, high-throughput clinical-genomic technologies which could potentially unveil significant high-level functions of genes.

An Evaluation of Research Ethics in Undergraduate Health Science Research Methodology Programs at a South African University.

PubMed

Coetzee, Tanya; Hoffmann, Willem A; de Roubaix, Malcolm

2015-10-01

The amended research ethics policy at a South African University required the ethics review of undergraduate research projects, prompting the need to explore the content and teaching approach of research ethics education in health science undergraduate programs. Two qualitative data collection strategies were used: document analysis (syllabi and study guides) and semi-structured interviews with research methodology coordinators. Five main themes emerged: (a) timing of research ethics courses, (b) research ethics course content, (c) sub-optimal use of creative classroom activities to facilitate research ethics lectures, (d) understanding the need for undergraduate project research ethics review, and (e) research ethics capacity training for research methodology lecturers and undergraduate project supervisors. © The Author(s) 2015.

Learning about the Human Genome. Part 2: Resources for Science Educators. ERIC Digest.

ERIC Educational Resources Information Center

Haury, David L.

This ERIC Digest identifies how the human genome project fits into the "National Science Education Standards" and lists Human Genome Project Web sites found on the World Wide Web. It is a resource companion to "Learning about the Human Genome. Part 1: Challenge to Science Educators" (Haury 2001). The Web resources and…

Forensic genetics and ethical, legal and social implications beyond the clinic

PubMed Central

Cho, Mildred K; Sankar, Pamela

2008-01-01

Data on human genetic variation help scientists to understand human origins, susceptibility to illness and genetic causes of disease. Destructive episodes in the history of genetic research make it crucial to consider the ethical and social implications of research in genomics, especially human genetic variation. The analysis of ethical, legal and social implications should be integrated into genetic research, with the participation of scientists who can anticipate and monitor the full range of possible applications of the research from the earliest stages. The design and implementation of research directs the ways in which its results can be used, and data and technology, rather than ethical considerations or social needs, drive the use of science in unintended ways. Here we examine forensic genetics and argue that all geneticists should anticipate the ethical and social issues associated with nonmedical applications of genetic variation research. PMID:15510102

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

NASA Astrophysics Data System (ADS)

Löfström, Erika; Pyhältö, Kirsi

2015-11-01

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

Engaging science in a climate of values: tools for animal scientists tasked with addressing ethical problems.

PubMed

Croney, C C; Anthony, R

2010-04-01

In the United States, escalating concerns about current farm animal science and production methods have resulted not only in increased food animal protection policies, but also in animal welfare legislation. Animal scientists and industry leaders are apprehensive that such policies may be driven primarily by emotion and a lack of scientific understanding, and thus may have unforeseen consequences. However, decisions about animal care, and particularly animal welfare, cannot be made solely on the basis of science because the potential effects on producers, animals, and concerned citizens and the implications for the environment and on food prices must also be considered. Balancing the interests and values of all stakeholders in regard to animal welfare problems has presented a considerable challenge. Ethical accounting processes, such as the Ethical Matrix and the ethics assessment process by Campbell, offer models to combine socioethical concerns with relevant factual information, thereby facilitating decision making that is ethically responsible and that offers viable solutions. A case study is used to illustrate application of the ethics assessment process by Campbell that includes identification of the ethical problems, the embedded values, the relevant facts, and moral tests that can be applied. Awareness of these emerging ways of examining ethics that offer real solutions to conflicts of interests and not merely "one size fits all" answers should be an asset to animal and poultry scientists.

Genetic testing and genomic analysis: a debate on ethical, social and legal issues in the Arab world with a focus on Qatar.

PubMed

El Shanti, Hatem; Chouchane, Lotfi; Badii, Ramin; Gallouzi, Imed Eddine; Gasparini, Paolo

2015-11-14

In 2013 both Saudi Arabia and Qatar launched genome projects with the aim of providing information for better diagnosis, treatment and prevention of diseases and, ultimately to realize personalized medicine by sequencing hundred thousands samples. These population based genome activities raise a series of relevant ethical, legal and social issues general, related to the specific population structure as well as to the Islamic perspective on genomic analysis and genetic testing. To contribute to the debate, the Authors after reviewing the existing literature and taking advantage of their professional experience in the field and in the geographic area, discuss and provide their opinions. In particular, the Authors focus on the impact of consanguinity on population structure and disease frequency in the Arab world, on genetic testing and genomic analysis (i.e. technical aspects, impact, etc.) and on their regulations. A comparison between the Islamic perspective and the ethical, social and legal issues raised in other population contexts is also carried. In conclusion, this opinion article with an up-to-date contribution to the discussion on the relevance and impact of genomic analysis and genetic testing in the Arab world, might help in producing specific national guidelines on genetic testing and genomic analysis and help accelerate the implementation and roll out of genome projects in Muslim countries and more specifically in Qatar, and other countries of the Gulf.

The ethics of genome editing in the clinic: A dose of realism for healthcare leaders.

PubMed

Bubela, Tania; Mansour, Yael; Nicol, Dianne

2017-05-01

Genome editing technologies promise therapeutic advances for genetic diseases. We discuss the ethical and societal issues raised by these technologies, including their use in preclinical research, their potential to address mutations in somatic cells, and their potential to make germ line alterations that may be passed to subsequent generations. We call for a proportionate response from health leaders based on a realistic assessment of benefits, risks, and timelines for clinical translation.

From Mendel to the Human Genome Project: The Implications for Nurse Education.

ERIC Educational Resources Information Center

Burton, Hilary; Stewart, Alison

2003-01-01

The Human Genome Project is brining new opportunities to predict and prevent diseases. Although pediatric nurses are the closest to these developments, most nurses will encounter genetic aspects of practice and must understand the basic science and its ethical, legal, and social dimensions. (Includes commentary by Peter Birchenall.) (SK)

Connecting Past with Present: A Mixed-Methods Science Ethics Course and its Evaluation.

PubMed

Semendeferi, Ioanna; Tsiamyrtzis, Panagiotis; Dcosta, Malcolm; Pavlidis, Ioannis

2016-02-01

We present a graduate science ethics course that connects cases from the historical record to present realities and practices in the areas of social responsibility, authorship, and human/animal experimentation. This content is delivered with mixed methods, including films, debates, blogging, and practicum; even the instructional team is mixed, including a historian of science and a research scientist. What really unites all of the course's components is the experiential aspect: from acting in historical debates to participating in the current scientific enterprise. The course aims to change the students' culture into one deeply devoted to the science ethics cause. To measure the sought after cultural change, we developed and validated a relevant questionnaire. Results of this questionnaire from students who took the course, demonstrate that the course had the intended effect on them. Furthermore, results of this questionnaire from controls indicate the need for cultural change in that cohort. All these quantitative results are reinforced by qualitative outcomes.

UNESCO's activities in ethics.

PubMed

ten Have, Henk A M J

2010-03-01

UNESCO is an intergovernmental organization with 193 Member States. It is concerned with a broad range of issues regarding education, science and culture. It is the only UN organisation with a mandate in science. Since 1993 it is addressing ethics of science and technology, with special emphasis on bioethics. One major objective of the ethics programme is the development of international normative standards. This is particularly important since many Member States only have a limited infrastructure in bioethics, lacking expertise, educational programs, bioethics committees and legal frameworks. UNESCO has recently adopted the Universal Declaration on Bioethics and Human Rights. The focus of current activities is now on implementation of this Declaration. Three activities are discussed that aim at improving and reinforcing the ethics infrastructure in relation to science and technology: the Global Ethics Observatory, the Ethics Education Programme and the Assisting Bioethics Committees project.

Ethics approval: responsibilities of journal editors, authors and research ethics committees.

PubMed

Bain, Luchuo Engelbert

2017-01-01

Meaningful progress of medicine depends on research that must ultimately involve human subjects. Obtaining ethical approval therefore, especially in medical sciences, should be a moral reflex for researchers. This unfortunately is not the case, with numerous researchers bypassing the ethics approval procedure, or simply unaware of its importance. Good research involves risks taken by research participants and uses tax payers' money in the process. These mandates the research endeavor to aim at attaining the highest degree of respect for the sacrifices made by others for science. Most researchers mistake scientific clearance or approval, for ethics approval. For a study to be ethical sound, it must be scientifically sound. This is only one of the activities carried out during protocol review. It is not uncommon for sensitive ethical concerns, especially in the social sciences to be overlooked and considered not to be accompanied by any serious risks for the research participants.The researcher has the responsibility of systematically consulting the competent ethics committee for advice and consequent approvals or ethical waivers. Journal editors and reviewers have the duty to systematically evaluate the ethical soundness of manuscripts submitted for review. Capacity building in research ethics and institutional support for Research Ethics Committees to speed up protocol review could reduce the incentive of carrying out research in human subjects without ethics approvals. It is hypocritical and idle to continue to expect optimal reviews on time and of good quality, from ethics committees functioning purely on altruistic grounds. Capacity building for researchers in research ethics, and institutional reforms and support for Research Ethics Committees appear not to have received the attention they truly deserve.

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

PubMed Central

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

2015-01-01

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

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

PubMed

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

2016-05-01

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

After the revolution? Ethical and social challenges in 'personalized genomic medicine'

PubMed

Juengst, Eric T; Settersten, Richard A; Fishman, Jennifer R; McGowan, Michelle L

2012-06-01

Personalized genomic medicine (PGM) is a goal that currently unites a wide array of biomedical initiatives, and is promoted as a 'new paradigm for healthcare' by its champions. Its promissory virtues include individualized diagnosis and risk prediction, more effective prevention and health promotion, and patient empowerment. Beyond overcoming scientific and technological hurdles to realizing PGM, proponents may interpret and rank these promises differently, which carries ethical and social implications for the realization of PGM as an approach to healthcare. We examine competing visions of PGM's virtues and the directions in which they could take the field, in order to anticipate policy choices that may lie ahead for researchers, healthcare providers and the public.

Cloning controversies: an overview of the science, ethics and politics.

PubMed

Sharma, B R

2005-01-01

Man's quest for knowledge is boundless. It is because of this quest and his untiring efforts to acquire it, that we have made such tremendous breakthroughs in the fields of science and medicine. Vaccines for hitherto incurable diseases, genetic engineering, and the correction of congenital and hereditary diseases are a few of these. With the successful cloning of 'Dolly', 'Molly' and 'Polly' we are now standing at the threshold of another major breakthrough--human cloning. However, are we ethically, morally and politically mature enough to 'go all the way' in a purely scientific manner, for the benefit of the human kind? A review of the scientific, ethical and political events in this field may be pertinent in trying to answer this important question.

Clinical medicine between science, ethics and economy: a complex activity.

PubMed

Federspil, Giovanni

2004-01-01

Until recently the common opinion was that medicine was substantially a natural science. In recent years, this has completely changed because two non-naturalistic disciplines have become part of the physician's activity; ethics and economy. These new disciplines have evidenced many problems to which doctors did not pay much attention before; however, they had an impact on the clinician's sensibility. At present, clinical medicine represents a complex knowledge as well as an activity: it is both a "historical" and a "technological" science characterized by a specific goal, the recovery or maintenance of health, and by a series of values.

Health sciences librarians' awareness and assessment of the Medical Library Association Code of Ethics for Health Sciences Librarianship: the results of a membership survey.

PubMed

Byrd, Gary D; Devine, Patricia J; Corcoran, Kate E

2014-10-01

The Medical Library Association (MLA) Board of Directors and president charged an Ethical Awareness Task Force and recommended a survey to determine MLA members' awareness of and opinions about the current Code of Ethics for Health Sciences Librarianship. THE TASK FORCE AND MLA STAFF CRAFTED A SURVEY TO DETERMINE: (1) awareness of the MLA code and its provisions, (2) use of the MLA code to resolve professional ethical issues, (3) consultation of other ethical codes or guides, (4) views regarding the relative importance of the eleven MLA code statements, (5) challenges experienced in following any MLA code provisions, and (6) ethical problems not clearly addressed by the code. Over 500 members responded (similar to previous MLA surveys), and while most were aware of the code, over 30% could not remember when they had last read or thought about it, and nearly half had also referred to other codes or guidelines. The large majority thought that: (1) all code statements were equally important, (2) none were particularly difficult or challenging to follow, and (3) the code covered every ethical challenge encountered in their professional work. Comments provided by respondents who disagreed with the majority views suggest that the MLA code could usefully include a supplementary guide with practical advice on how to reason through a number of ethically challenging situations that are typically encountered by health sciences librarians.

Emerging issues in public health genomics

PubMed Central

Roberts, J. Scott

2014-01-01

This review highlights emerging areas of interest in public health genomics. First, recent advances in newborn screening (NBS) are described, with a focus on practice and policy implications of current and future efforts to expand NBS programs (e.g., via next-generation sequencing). Next, research findings from the rapidly progressing field of epigenetics and epigenomics are detailed, highlighting ways in which our emerging understanding in these areas could guide future intervention and research efforts in public health. We close by considering various ethical, legal and social issues posed by recent developments in public health genomics; these include policies to regulate access to personal genomic information; the need to enhance genetic literacy in both health professionals and the public; and challenges in ensuring that the benefits (and burdens) from genomic discoveries and applications are equitably distributed. Needs for future genomics research that integrates across basic and social sciences are also noted. PMID:25184533

The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues

PubMed Central

Charlebois, Kathleen; Palmour, Nicole; Knoppers, Bartha Maria

2016-01-01

This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers’ perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers’ legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients’ control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale. PMID:27755563

The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues.

PubMed

Charlebois, Kathleen; Palmour, Nicole; Knoppers, Bartha Maria

2016-01-01

This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers' perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers' legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients' control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale.

Genomics: The Science and Technology Behind the Human Genome Project (by Charles R. Cantor and Cassandra L. Smith)

NASA Astrophysics Data System (ADS)

Serra, Reviewed By Martin J.

2000-01-01

several examples of genetic and genome analysis, additional problem/homework sets would need to be developed to ensure student comprehension. The text steers clear of the ethical implications of the Human Genome Initiative and remains true to its subtitle The Science and Technology .

Toward an essential ethic for teaching science in the new millennium

NASA Astrophysics Data System (ADS)

Hays, Irene De La Bretonne

The purpose of this study was to identify and explore values and views that might underlie an essential ethic for teaching science in the new millennium. With such an ethic, teachers may be better able to prepare young people to form and fully participate in communities that restore and sustain Earth. Reviewed in the literature for this study were changing philosophies and theories from early indigenous cultures to the present on the nature of nature, the value of nature, and the human relationship with nature. These philosophies and theories were found to influence values that today underlie the work scientists do and the ways young people are educated in science. In the study, two groups of participants--Nature Writers and scientists--revealed the essence and meaning of their relationship with nature. A two-stage, modified Delphi method was used for collecting data. Stage One comprised the first "round" of the Delphi and involved content analysis of writings by a select group of U.S. Nature Writers from the early 1800s to the present. In Stage Two, comprising three rounds of the modified Delphi, perspectives of Nature Writers were imbedded in questionnaires and presented for response to a select group of scientists connected with research and education at National Laboratories across the country. Finally, results from each participant group were brought together in a recursive process, one with the other, to determine findings. Strong Earth-care values, including receptivity, responsibility, interdependence, respect, cooperation, love, and care, were found to be held in common by the Nature Writers and scientists in this study and could form the foundation for an essential ethic for teaching science. The strongest dissonance between Nature Writers and scientists was evident in emotional and spiritual domains--despite that many scientists revealed emotional and spiritual elements in stories told of their experiences with nature. Contrary to what might have been

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

PubMed

Meagher, Karen M; Lee, Lisa M

2016-01-01

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

Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels.

PubMed

Isa, Noor Munirah; Hj Safian Shuri, Muhammad Fakhruddin

2018-02-01

Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation's traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors' concerns about the main motivations for conducting such research and the extent to which such research will benefit society.

Academic Freedom, Innovation, and Responsibility: Towards an "Ethical GPS" in Higher Education and Science

ERIC Educational Resources Information Center

Sadlak, Jan; Ratajczak, Henryk

2004-01-01

In lieu of the usual "From the Editors" piece, Jan Sadlak, Director of UNESCO-CEPES, and Henryk Ratajczak, Vice-President of the European Academy of Arts, Sciences and Humanities (EAASH), describe below the scope and highlights of the International Conference on Ethical and Moral Dimensions for Higher Education and Science in Europe,…

The Human Genome Project: big science transforms biology and medicine

PubMed Central

2013-01-01

The Human Genome Project has transformed biology through its integrated big science approach to deciphering a reference human genome sequence along with the complete sequences of key model organisms. The project exemplifies the power, necessity and success of large, integrated, cross-disciplinary efforts - so-called ‘big science’ - directed towards complex major objectives. In this article, we discuss the ways in which this ambitious endeavor led to the development of novel technologies and analytical tools, and how it brought the expertise of engineers, computer scientists and mathematicians together with biologists. It established an open approach to data sharing and open-source software, thereby making the data resulting from the project accessible to all. The genome sequences of microbes, plants and animals have revolutionized many fields of science, including microbiology, virology, infectious disease and plant biology. Moreover, deeper knowledge of human sequence variation has begun to alter the practice of medicine. The Human Genome Project has inspired subsequent large-scale data acquisition initiatives such as the International HapMap Project, 1000 Genomes, and The Cancer Genome Atlas, as well as the recently announced Human Brain Project and the emerging Human Proteome Project. PMID:24040834

Quality of publication ethics in the instructions to the authors of Iranian journals of medical sciences.

PubMed

Salamat, Fatemeh; Sobhani, Abdol-Rasoul; Mallaei, Mahin

2013-03-01

Providing a perfect instruction to authors can prevent most potential publication ethics errors. This study was conducted to determine the quality of ethical considerations in the instructions to the authors of Iranian research scientific journals of medical sciences (accredited by the Commission for Accreditation and Improvement of Iranian Medical Journals) in October 2011. Checklist items (n=15) were extracted from the national manual of ethics in medical research publications, and the validity of the manual of ethics was assessed. All the accredited Iranian journals of medical sciences (n=198) were entered into the study. The instructions to the authors of 160 accredited Iranian journals were available online and were reviewed. The ANOVA and Kendall Correlation coefficient were performed to analyze the results. A total of 76 (47.5%) of the 160 journals were in English and 84 (52.5%) were in Farsi. The most frequently mentioned items related to publication ethics comprised "commitment not to send manuscripts to other journals and re-publish manuscripts" (85%, 83.8%), "aim and scope" of the journal (81.9%), "principles of medical ethics in the use of human samples" (74.4%), and "review process" (74.4%). On the other hand, the items of "principles of advertising" (1.2%), "authorship criteria" (15%), and "integrity in publication of clinical trial results" (30.6%) were the least frequently mentioned ones. Based on the study findings, the quality of publication ethics, as instructed to the authors, can improve the quality of the journals.

Ethics in the Supervisory Relationship: Supervisors' and Doctoral Students' Dilemmas in the Natural and Behavioural Sciences

ERIC Educational Resources Information Center

Löfström, Erika; Pyhältö, Kirsi

2017-01-01

This study explored the perceptions of ethical issues in supervision among doctoral students and supervisors. The nature of ethical issues identified by doctoral students (n = 28) and their supervisors (n = 14) is explored and the degree of fit and misfit between their perceptions in two cases representing the natural and behavioural sciences is…

Ecotoxicity testing: science, politics and ethics.

PubMed

Walker, Colin H

2008-02-01

Animal welfare organisations have long been concerned about the use of animals for ecotoxicity testing. Ecotoxicity testing is a necessary part of the statutory risk assessment of chemicals that may be released into the environment. It is sometimes also carried out during the development of new chemicals and in the investigation of pollution in the field. This review considers the existing requirements for ecotoxicity testing, with particular reference to practices in the European Union, including the recent REACH system proposals, before discussing criticisms that have been made of existing practices for environmental risk assessment. These criticisms have been made on scientific and ethical grounds, as well as on questions of cost. A case is made for greater investment in the development of alternative testing methods, which could improve the science, as well as serving the cause of animal welfare. It has frequently been suggested that the statutory requirements for environmental risk assessment are too rigid and bureaucratic. A case is made for flexibility and the greater involvement of scientists in the risk assessment procedure, in the interests of both improved science and improved animal welfare.

Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions.

PubMed

Riesch, Hauke; Potter, Clive

2014-01-01

Citizen science as a way of communicating science and doing public engagement has over the past decade become the focus of considerable hopes and expectations. It can be seen as a win-win situation, where scientists get help from the public and the participants get a public engagement experience that involves them in real and meaningful scientific research. In this paper we present the results of a series of qualitative interviews with scientists who participated in the 'OPAL' portfolio of citizen science projects that has been running in England since 2007: What were their experiences of participating in citizen science? We highlight two particular sets of issues that our participants have voiced, methodological/epistemological and ethical issues. While we share the general enthusiasm over citizen science, we hope that the research in this paper opens up more debate over the potential pitfalls of citizen science as seen by the scientists themselves.

The current state of funded NIH grants in implementation science in genomic medicine: a portfolio analysis.

PubMed

Roberts, Megan C; Clyne, Mindy; Kennedy, Amy E; Chambers, David A; Khoury, Muin J

2017-10-26

PurposeImplementation science offers methods to evaluate the translation of genomic medicine research into practice. The extent to which the National Institutes of Health (NIH) human genomics grant portfolio includes implementation science is unknown. This brief report's objective is to describe recently funded implementation science studies in genomic medicine in the NIH grant portfolio, and identify remaining gaps.MethodsWe identified investigator-initiated NIH research grants on implementation science in genomic medicine (funding initiated 2012-2016). A codebook was adapted from the literature, three authors coded grants, and descriptive statistics were calculated for each code.ResultsForty-two grants fit the inclusion criteria (~1.75% of investigator-initiated genomics grants). The majority of included grants proposed qualitative and/or quantitative methods with cross-sectional study designs, and described clinical settings and primarily white, non-Hispanic study populations. Most grants were in oncology and examined genetic testing for risk assessment. Finally, grants lacked the use of implementation science frameworks, and most examined uptake of genomic medicine and/or assessed patient-centeredness.ConclusionWe identified large gaps in implementation science studies in genomic medicine in the funded NIH portfolio over the past 5 years. To move the genomics field forward, investigator-initiated research grants should employ rigorous implementation science methods within diverse settings and populations.Genetics in Medicine advance online publication, 26 October 2017; doi:10.1038/gim.2017.180.

Genome Science: A Video Tour of the Washington University Genome Sequencing Center for High School and Undergraduate Students

PubMed Central

2005-01-01

Sequencing of the human genome has ushered in a new era of biology. The technologies developed to facilitate the sequencing of the human genome are now being applied to the sequencing of other genomes. In 2004, a partnership was formed between Washington University School of Medicine Genome Sequencing Center's Outreach Program and Washington University Department of Biology Science Outreach to create a video tour depicting the processes involved in large-scale sequencing. “Sequencing a Genome: Inside the Washington University Genome Sequencing Center” is a tour of the laboratory that follows the steps in the sequencing pipeline, interspersed with animated explanations of the scientific procedures used at the facility. Accompanying interviews with the staff illustrate different entry levels for a career in genome science. This video project serves as an example of how research and academic institutions can provide teachers and students with access and exposure to innovative technologies at the forefront of biomedical research. Initial feedback on the video from undergraduate students, high school teachers, and high school students provides suggestions for use of this video in a classroom setting to supplement present curricula. PMID:16341256

Health sciences librarians' awareness and assessment of the Medical Library Association Code of Ethics for Health Sciences Librarianship: the results of a membership survey

PubMed Central

Byrd, Gary D.; Devine, Patricia J.; Corcoran, Kate E.

2014-01-01

Objective: The Medical Library Association (MLA) Board of Directors and president charged an Ethical Awareness Task Force and recommended a survey to determine MLA members' awareness of and opinions about the current Code of Ethics for Health Sciences Librarianship. Methods: The task force and MLA staff crafted a survey to determine: (1) awareness of the MLA code and its provisions, (2) use of the MLA code to resolve professional ethical issues, (3) consultation of other ethical codes or guides, (4) views regarding the relative importance of the eleven MLA code statements, (5) challenges experienced in following any MLA code provisions, and (6) ethical problems not clearly addressed by the code. Results: Over 500 members responded (similar to previous MLA surveys), and while most were aware of the code, over 30% could not remember when they had last read or thought about it, and nearly half had also referred to other codes or guidelines. The large majority thought that: (1) all code statements were equally important, (2) none were particularly difficult or challenging to follow, and (3) the code covered every ethical challenge encountered in their professional work. Implications: Comments provided by respondents who disagreed with the majority views suggest that the MLA code could usefully include a supplementary guide with practical advice on how to reason through a number of ethically challenging situations that are typically encountered by health sciences librarians. PMID:25349544

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

PubMed Central

Meagher, Karen M.

2016-01-01

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

Multimedia presentations on the human genome: Implementation and assessment of a teaching program for the introduction to genome science using a poster and animations.

PubMed

Kano, Kei; Yahata, Saiko; Muroi, Kaori; Kawakami, Masahiro; Tomoda, Mari; Miyaki, Koichi; Nakayama, Takeo; Kosugi, Shinji; Kato, Kazuto

2008-11-01

Genome science, including topics such as gene recombination, cloning, genetic tests, and gene therapy, is now an established part of our daily lives; thus we need to learn genome science to better equip ourselves for the present day. Learning from topics directly related to the human has been suggested to be more effective than learning from Mendel's peas not only because many students do not understand that plants are organisms, but also because human biology contains important social and health issues. Therefore, we have developed a teaching program for the introduction to genome science, whose subjects are focused on the human genome. This program comprises mixed multimedia presentations: a large poster with illustrations and text on the human genome (a human genome map for every home), and animations on the basics of genome science. We implemented and assessed this program at four high schools. Our results indicate that students felt that they learned about the human genome from the program and some increases in students' understanding were observed with longer exposure to the mixed multimedia presentations. Copyright © 2008 International Union of Biochemistry and Molecular Biology, Inc.

What is data ethics?

PubMed

Floridi, Luciano; Taddeo, Mariarosaria

2016-12-28

This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data ethics builds on the foundation provided by computer and information ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations-the interactions among hardware, software and data-rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments.This article is part of the themed issue 'The ethical impact of data science'. © 2016 The Author(s).

Collision of Epistemological Frameworks: Religion and Social Science's Unshared Understanding of Ethics

ERIC Educational Resources Information Center

Firmin, Michael W.

2009-01-01

Religious scholars and social science experts frequently differ and sometimes clash when writing and discussing issues of ethics. Sometimes unshared understandings on fundamental world-view issues is the etiology for these differences. Differences in defining truth, whether philosophically or empirically, often is at the root etiology in these…

"Harnessing genomics to improve health in Africa" - an executive course to support genomics policy.

PubMed

Smith, Alyna C; Mugabe, John; Singer, Peter A; Daar, Abdallah S

2005-01-24

BACKGROUND: Africa in the twenty-first century is faced with a heavy burden of disease, combined with ill-equipped medical systems and underdeveloped technological capacity. A major challenge for the international community is to bring scientific and technological advances like genomics to bear on the health priorities of poorer countries. The New Partnership for Africa's Development has identified science and technology as a key platform for Africa's renewal. Recognizing the timeliness of this issue, the African Centre for Technology Studies and the University of Toronto Joint Centre for Bioethics co-organized a course on Genomics and Public Health Policy in Nairobi, Kenya, the first of a series of similar courses to take place in the developing world. This article presents the findings and recommendations that emerged from this process, recommendations which suggest that a regional approach to developing sound science and technology policies is the key to harnessing genome-related biotechnology to improve health and contribute to human development in Africa. METHODS: The objectives of the course were to familiarize participants with the current status and implications of genomics for health in Africa; to provide frameworks for analyzing and debating the policy and ethical questions; and to begin developing a network across different sectors by sharing perspectives and building relationships. To achieve these goals the course brought together a diverse group of stakeholders from academic research centres, the media, non-governmental, voluntary and legal organizations to stimulate multi-sectoral debate around issues of policy. Topics included scientific advances in genomics innovation systems and business models, international regulatory frameworks, as well as ethical and legal issues. RESULTS: Seven main recommendations emerged: establish a network for sustained dialogue among participants; identify champions among politicians; use the New Plan for African

Ethics Hype?

PubMed

Caulfield, Timothy

2016-09-01

There has been growing concern about the phenomenon of science hype, the tendency to exaggerate the value or near-future application of research results. Although this is a problem that touches every area of biomedicine, the topic of genetics seems to be particularly prone to enthusiastic predictions. The world has been told for over two decades-by the media, researchers, politicians, and the biotech industry-that a genome-driven health care revolution is just around the corner. And while the revolution never seems to arrive, the hopeful rhetoric continues. It has been suggested that this unrelenting "genohype" is having a range of adverse social consequences, including misleading the public and hurting the long-term legitimacy of the field. While we need more good data on the nature and magnitude of these possible harms, few would argue with the proposition that sustained science hype is a bad thing. We all benefit from robust science and accurate public representations of biomedical research. But, to date, there has been very little consideration of the degree to which the scholarship on the related ethical, legal, and social issues has been hyped. Are the conclusions from ELSI scholarship also exaggerated? © 2016 The Hastings Center.

An Analysis of Theories Related to Experiential Learning for Practical Ethics in Science and Technology

ERIC Educational Resources Information Center

Parahakaran, Suma

2017-01-01

Learners in higher education are self -driven to attain goals and objectives of what is required by the Universities for career prospects in the fields of Sciences and Technology. This paper analyses theories of experiential learning which will contribute to implementation of Ethical behaviors in science and technology towards citizenship…

After the revolution? Ethical and social challenges in ‘personalized genomic medicine’

PubMed Central

Juengst, Eric T; Settersten, Richard A; Fishman, Jennifer R; McGowan, Michelle L

2013-01-01

Personalized genomic medicine (PGM) is a goal that currently unites a wide array of biomedical initiatives, and is promoted as a ‘new paradigm for healthcare’ by its champions. Its promissory virtues include individualized diagnosis and risk prediction, more effective prevention and health promotion, and patient empowerment. Beyond overcoming scientific and technological hurdles to realizing PGM, proponents may interpret and rank these promises differently, which carries ethical and social implications for the realization of PGM as an approach to healthcare. We examine competing visions of PGM’s virtues and the directions in which they could take the field, in order to anticipate policy choices that may lie ahead for researchers, healthcare providers and the public. PMID:23662108

ELSI Bibliography: Ethical legal and social implications of the Human Genome Project

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

Yesley, M.S.

This second edition of the ELSI Bibliography provides a current and comprehensive resource for identifying publications on the major topics related to the ethical, legal and social issues (ELSI) of the Human Genome Project. Since the first edition of the ELSI Bibliography was printed last year, new publications and earlier ones identified by additional searching have doubled our computer database of ELSI publications to over 5600 entries. The second edition of the ELSI Bibliography reflects this growth of the underlying computer database. Researchers should note that an extensive collection of publications in the database is available for public use atmore » the General Law Library of Los Alamos National Laboratory (LANL).« less

Increasing Interest, Confidence and Understanding of Ethical Issues in Science through Case-Based Instructional Technology.

ERIC Educational Resources Information Center

Lundeberg, Mary A.; Bergland, Mark; Klyczek, Karen; Mogen, Kim; Johnson, Doug; Harmes, Nina

Software designed to promote the use of open-ended investigations in science education was evaluated in a study of whether using case-based simulation enhances students' understanding of ethical issues and data interpretation in science. The software was a DNA gel electrophoresis simulation that enabled students to conduct simulated genetic tests.…

Human genome and philosophy: what ethical challenge will human genome studies bring to the medical practices in the 21st century?

PubMed

Renzong, Q

2001-12-01

A human being or person cannot be reduced to a set of human genes, or human genome. Genetic essentialism is wrong, because as a person the entity should have self-conscious and social interaction capacity which is grown in an interpersonal relationship. Genetic determinism is wrong too, the relationship between a gene and a trait is not a linear model of causation, but rather a non-linear one. Human genome is a complexity system and functions in a complexity system of human body and a complexity of systems of natural/social environment. Genetic determinism also caused the issue of how much responsibility an agent should take for her/his action, and how much degrees of freedom will a human being have. Human genome research caused several conceptual issues. Can we call a gene 'good' or 'bad', 'superior' of 'inferior'? Is a boy who is detected to have the gene of Huntington's chorea or Alzheimer disease a patient? What should the term 'eugenics' mean? What do the terms such as 'gene therapy', 'treatment' and 'enhancement' and 'human cloning' mean etc.? The research of human genome and its application caused and will cause ethical issues. Can human genome research and its application be used for eugenics, or only for the treatment and prevention of diseases? Must the principle of informed consent/choice be insisted in human genome research and its application? How to protecting gene privacy and combating the discrimination on the basis of genes? How to promote the quality between persons, harmony between ethnic groups and peace between countries? How to establish a fair, just, equal and equitable relationship between developing and developed countries in regarding to human genome research and its application?

Societal and ethical issues in human biomonitoring--a view from science studies.

PubMed

Bauer, Susanne

2008-06-05

Human biomonitoring (HBM) has rapidly gained importance. In some epidemiological studies, the measurement and use of biomarkers of exposure, susceptibility and disease have replaced traditional environmental indicators. While in HBM, ethical issues have mostly been addressed in terms of informed consent and confidentiality, this paper maps out a larger array of societal issues from an epistemological perspective, i.e. bringing into focus the conditions of how and what is known in environmental health science. In order to analyse the effects of HBM and the shift towards biomarker research in the assessment of environmental pollution in a broader societal context, selected analytical frameworks of science studies are introduced. To develop the epistemological perspective, concepts from "biomedical platform sociology" and the notion of "epistemic cultures" and "thought styles" are applied to the research infrastructures of HBM. Further, concepts of "biocitizenship" and "civic epistemologies" are drawn upon as analytical tools to discuss the visions and promises of HBM as well as related ethical problematisations. In human biomonitoring, two different epistemological cultures meet; these are environmental science with for instance pollution surveys and toxicological assessments on the one hand, and analytical epidemiology investigating the association between exposure and disease in probabilistic risk estimation on the other hand. The surveillance of exposure and dose via biomarkers as envisioned in HBM is shifting the site of exposure monitoring to the human body. Establishing an HBM platform faces not only the need to consider individual decision autonomy as an ethics issue, but also larger epistemological and societal questions, such as the mode of evidence demanded in science, policy and regulation. The shift of exposure monitoring towards the biosurveillance of human populations involves fundamental changes in the ways environment, health and disease are

"Harnessing genomics to improve health in Africa" – an executive course to support genomics policy

PubMed Central

Smith, Alyna C; Mugabe, John; Singer, Peter A; Daar, Abdallah S

2005-01-01

Background Africa in the twenty-first century is faced with a heavy burden of disease, combined with ill-equipped medical systems and underdeveloped technological capacity. A major challenge for the international community is to bring scientific and technological advances like genomics to bear on the health priorities of poorer countries. The New Partnership for Africa's Development has identified science and technology as a key platform for Africa's renewal. Recognizing the timeliness of this issue, the African Centre for Technology Studies and the University of Toronto Joint Centre for Bioethics co-organized a course on Genomics and Public Health Policy in Nairobi, Kenya, the first of a series of similar courses to take place in the developing world. This article presents the findings and recommendations that emerged from this process, recommendations which suggest that a regional approach to developing sound science and technology policies is the key to harnessing genome-related biotechnology to improve health and contribute to human development in Africa. Methods The objectives of the course were to familiarize participants with the current status and implications of genomics for health in Africa; to provide frameworks for analyzing and debating the policy and ethical questions; and to begin developing a network across different sectors by sharing perspectives and building relationships. To achieve these goals the course brought together a diverse group of stakeholders from academic research centres, the media, non-governmental, voluntary and legal organizations to stimulate multi-sectoral debate around issues of policy. Topics included scientific advances in genomics innovation systems and business models, international regulatory frameworks, as well as ethical and legal issues. Results Seven main recommendations emerged: establish a network for sustained dialogue among participants; identify champions among politicians; use the New Plan for African

Full-Cycle Assessment of Critical Thinking in an Ethics and Science Course

ERIC Educational Resources Information Center

Blue, Jennifer; Taylor, Beverley; Yarrison-Rice, Jan

2008-01-01

Enhancing critical thinking skills for undergraduate students is important across the curriculum and between disciplines. We report on a method of improving critical thinking skills, which was studied through an Ethics and Science First-Year Seminar course. We used full cycle assessment over a three-year period to assess students' development and…

Publication Ethics: A Case Series with Recommendations According to Committee on Publication Ethics (COPE).

PubMed

Fazly Bazzaz, Bibi Seddigheh; Sadeghi, Ramin

2012-09-01

Ethical misconduct is not a new issue in the history of science and literature. However, ethical misconducts in science have grown considerably in the modern era which is due to emphasis on the scientific proliferation in research institutes and gauging scientists according to their publications. In the current case series, several misconducts occurring over the previous years in Mashhad University of Medical Sciences (Mashhad, Iran) either for Journals or Faculty members were gathered and specific recommendations were provided to avoid similar events in the future. All recommendations are according to Committee on Publication Ethics (COPE).

Assessing Veterinary and Animal Science Students' Moral Judgment Development on Animal Ethics Issues.

PubMed

Verrinder, Joy M; Phillips, Clive J C

2015-01-01

Little has been done to assess veterinarians' moral judgment in relation to animal ethics issues. Following development of the VetDIT, a new moral judgment measure for animal ethics issues, this study aimed to refine and further validate the VetDIT, and to identify effects of teaching interventions on moral judgment and changes in moral judgment over time. VetDIT-V1 was refined into VetDIT-V2, and V3 was developed as a post-intervention test to prevent repetition. To test these versions for comparability, veterinary and animal science students (n=271) were randomly assigned to complete different versions. The VetDIT discriminates between stages of moral judgment, condensed into three schemas: Personal Interest (PI), Maintaining Norms (MN), and Universal Principles (UP). There were no differences in the scores for MN and UP between the versions, and we equated PI scores to account for differences between versions. Veterinary science students (n=130) who completed a three-hour small-group workshop on moral development theory and ethical decision making increased their use of UP in moral reasoning, whereas students (n=271) who received similar information in a 50-minute lecture did not. A longitudinal comparison of matched first- and third-year students (n=39) revealed no moral judgment development toward greater use of UP. The VetDIT is therefore useful for assessing moral judgment of animal and human ethics issues in veterinary and other animal-related professions. Intensive small-group workshops using moral development knowledge and skills, rather than lectures, are conducive to developing veterinary students' moral judgment.

The Perfect Storm—Genetic Engineering, Science, and Ethics

NASA Astrophysics Data System (ADS)

Rollin, Bernard E.

2014-02-01

Uncertainty about ethics has been a major factor in societal rejection of biotechnology. Six factors help create a societal "perfect storm" regarding ethics and biotechnology: Social demand for ethical discussion; societal scientific illiteracy; poor social understanding of ethics; a "Gresham's Law for Ethics;" Scientific Ideology; vested interests dominating ethical discussion. How this can be remedied is discussed.

How Many Principles for Public Health Ethics?

PubMed Central

Coughlin, Steven S.

2009-01-01

General moral (ethical) principles play a prominent role in certain methods of moral reasoning and ethical decision-making in bioethics and public health. Examples include the principles of respect for autonomy, beneficence, nonmaleficence, and justice. Some accounts of ethics in public health have pointed to additional principles related to social and environmental concerns, such as the precautionary principle and principles of solidarity or social cohesion. This article provides an overview of principle-based methods of moral reasoning as they apply to public health ethics including a summary of advantages and disadvantages of methods of moral reasoning that rely upon general principles of moral reasoning. Drawing upon the literature on public health ethics, examples are provided of additional principles, obligations, and rules that may be useful for analyzing complex ethical issues in public health. A framework is outlined that takes into consideration the interplay of ethical principles and rules at individual, community, national, and global levels. Concepts such as the precautionary principle and solidarity are shown to be useful to public health ethics to the extent that they can be shown to provide worthwhile guidance and information above and beyond principles of beneficence, nonmaleficence, and justice, and the clusters of rules and maxims that are linked to these moral principles. Future directions likely to be productive include further work on areas of public health ethics such as public trust, community empowerment, the rights of individuals who are targeted (or not targeted) by public health interventions, individual and community resilience and wellbeing, and further clarification of principles, obligations, and rules in public health disciplines such as environmental science, prevention and control of chronic and infectious diseases, genomics, and global health. PMID:20072707

Teaching and Assessing Ethics and Social Responsibility in Undergraduate Science: A Position Paper

ERIC Educational Resources Information Center

Schultz, Madeleine

2014-01-01

Institutional graduate capabilities and discipline threshold learning outcomes require science students to demonstrate ethical conduct and social responsibility. However, the teaching and assessment of these concepts are not straightforward. Australian chemistry academics participated in a workshop in 2013 to discuss and develop teaching and…

Behavioral Ethics in Practice: Integrating Service Learning into a Graduate Business Ethics Course

ERIC Educational Resources Information Center

O'Brien, Kevin; Wittmer, Dennis; Ebrahimi, Bahman Paul

2017-01-01

Adopting a broad definition that distinguishes behavioral ethics as science and behavioral ethics in practice, we describe how service learning can be a meaningful component of a four-credit, one-quarter graduate business ethics course by blending both normative/prescriptive and behavioral/descriptive ethics. We provide a conceptual and…

Can ethics survive the onslaught of science?

PubMed

Lupton, Michael

2013-09-01

The issue on which I will attempt to cast some light is certainly not novel. It has been ongoing for many years but the pace of scientific progress is gathering and the retreat of ethical barriers is relentless. I will illustrate my thesis by using examples of legal decisions from the realm of assisted human procreation and the posthumous conception of children from the sperm of deceased fathers e.g., the cases of Diane Blood, Parpalaix and Nikolas Coltan Evans. I will also highlight the recent case of Ashley X, a nine year old girl whose parents authorised radical medical treatment to arrest her development. I will argue that the law is being driven to roll back the ethical standards derived from our legacy of Natural Law by the imperatives of human rights e.g., the right to found a family, and the quest for patient autonomy. These are both admirable goals but fulfilling these goals comes at a cost to cherished ethical values e.g., that children are conceived by living fathers and that indulging the personal desires of every individual cannot forever be encompassed. As our legislators and courts chip away at our core network of ethical values, are they replacing them with equivalent values or do their decisions amount to a hollowing out of the core ethical values e.g., Thou shalt not kill and that human life is sacrosanct? Yet abortion is legal in many countries as is euthanasia. Paradoxically there is legislative protection for embryos by limiting experimentation on these clusters of cells. How do you construct a rational ethical framework with such blatant legal inconsistencies in the protection of human life? The sanctity of human life constitutes one of the fundamental pillars of ethical values which, in turn, support much more of the structure of ethics. Is a society that permits freezing the development of a nine year old child not a society whose ethics are so compromised that it is doomed to defend an ever diminishing mass of ethical values? Is there a

Some Ethical Considerations in Astronomy Research and Practice

NASA Astrophysics Data System (ADS)

Koepsell, David

2012-08-01

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

The Ethics and Politics of Ethics Approval

ERIC Educational Resources Information Center

Battin, Tim; Riley, Dan; Avery, Alan

2014-01-01

The regulatory scope of Human Research Ethics Committees can be problematic for a variety of reasons. Some scholars have argued the ethics approval process, for example, is antithetical to certain disciplines in the humanities and social sciences, while others are willing to give it qualified support. This article uses a case study to cast the…

The Perfect Storm--Genetic Engineering, Science, and Ethics

ERIC Educational Resources Information Center

Rollin, Bernard E.

2014-01-01

Uncertainty about ethics has been a major factor in societal rejection of biotechnology. Six factors help create a societal "perfect storm" regarding ethics and biotechnology: Social demand for ethical discussion; societal scientific illiteracy; poor social understanding of ethics; a "Gresham's Law for Ethics;" Scientific…

Genomics and infectious disease: a call to identify the ethical, legal and social implications for public health and clinical practice.

PubMed

Geller, Gail; Dvoskin, Rachel; Thio, Chloe L; Duggal, Priya; Lewis, Michelle H; Bailey, Theodore C; Sutherland, Andrea; Salmon, Daniel A; Kahn, Jeffrey P

2014-01-01

Advances in genomics are contributing to the development of more effective, personalized approaches to the prevention and treatment of infectious diseases. Genetic sequencing technologies are furthering our understanding of how human and pathogen genomic factors - and their interactions - contribute to individual differences in immunologic responses to vaccines, infections and drug therapies. Such understanding will influence future policies and procedures for infectious disease management. With the potential for tailored interventions for particular individuals, populations or subpopulations, ethical, legal and social implications (ELSIs) may arise for public health and clinical practice. Potential considerations include balancing health-related benefits and harms between individuals and the larger community, minimizing threats to individual privacy and autonomy, and ensuring just distribution of scarce resources. In this Opinion, we consider the potential application of pathogen and host genomic information to particular viral infections that have large-scale public health consequences but differ in ELSI-relevant characteristics such as ease of transmission, chronicity, severity, preventability and treatability. We argue for the importance of anticipating these ELSI issues in advance of new scientific discoveries, and call for the development of strategies for identifying and exploring ethical questions that should be considered as clinical, public health and policy decisions are made.

Whose Ethics, Whose Accountability? A Debate about University Research Ethics Committees

ERIC Educational Resources Information Center

Hoecht, Andreas

2011-01-01

Research ethics approval procedures and research ethics committees (RECs) are now well-established in most Western Universities. RECs base their judgements on an ethics code that has been developed by the health and biomedical sciences research community and that is widely considered to be universally valid regardless of discipline. On the other…

Scientists' and science writers' experiences reporting genetic discoveries: toward an ethic of trust in science journalism.

PubMed

Geller, Gail; Bernhardt, Barbara A; Gardner, Mary; Rodgers, Joann; Holtzman, Neil A

2005-03-01

To describe the relationship between scientists and science writers and their experiences with media reporting of genetic discoveries. This study included individual interviews with 15 scientists who specialize in genetics and 22 science writers who have covered their stories and a qualitative analysis of the data. Scientists and science writers place an equally high priority on accuracy of media reports. They agree on what makes genetics stories newsworthy and the particular challenges in reporting genetic discoveries (i.e., poor public understanding of genetics, the association of genetics with eugenics, and the lack of immediately apparent applications of genetic discoveries to human health). The relationship between scientists and bona fide science writers is largely positive. Scientists tend to trust, respect, and be receptive to science writers. Both scientists and science writers acknowledge that trust is an essential component of a good interview. Science writers report a fair degree of autonomy with respect to the relationship they have with their editors. To the degree that trust facilitates the access that science writers have to scientists, as well as higher quality interviews between scientists and science writers, trust might also contribute to higher quality media reporting. Therefore, scientists and science writers have an ethical obligation to foster trusting relationships with each other. Future research should systematically explore ways to cultivate such relationships and assess their impact on the quality of science journalism.

Dilemmas with Dilemmas...Exploring the Suitability of Dilemma Stories as a Way of Addressing Ethical Issues in Science Education.

ERIC Educational Resources Information Center

Settelmaier, Elisabeth

Traditionally, many science educators have taught science without addressing ethical questions. However, the inclusion of moral discourse in science teaching may help educators to bring to the fore problematic issues in relation to science, and it may offer an opportunity for students to practice their future engagement in the public discourse…

What is data ethics?

PubMed Central

2016-01-01

This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data ethics builds on the foundation provided by computer and information ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations—the interactions among hardware, software and data—rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments. This article is part of the themed issue ‘The ethical impact of data science’. PMID:28336805

The Puzzle of Inheritance: Genetics and the Methods of Science.

ERIC Educational Resources Information Center

Cutter, Mary Ann G.; Drexler, Edward; Friedman, B. Ellen; McCullough, Laurence B.; McInerney, Joseph D.; Murray, Jeffrey C.; Rossiter, Belinda; Zola, John

This instructional module contains a description of the Human Genome Project (HGP). A discussion of issues in the philosophy of science and some of the ethical, legal, and social implications of research in genetics, and a survey of fundamental genetics concepts and of new, nontraditional concepts of inheritance are also included. Six…

The Use of Ethical Frameworks for Implementing Science as a Human Endeavour in Year 10 Biology

ERIC Educational Resources Information Center

Yap, Siew Fong; Dawson, Vaille

2014-01-01

This research focuses on the use of ethical frameworks as a pedagogical model for socio-scientific education in implementing the "Science as a Human Endeavour" (SHE) strand of the Australian Curriculum: Science in a Year 10 biology class in a Christian college in metropolitan Perth, Western Australia. Using a case study approach, a mixed…

The human genome: Some assembly required. Final report

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

NONE

1994-12-31

The Human Genome Project promises to be one of the most rewarding endeavors in modern biology. The cost and the ethical and social implications, however, have made this project the source of considerable debate both in the scientific community and in the public at large. The 1994 Graduate Student Symposium addresses the scientific merits of the project, the technical issues involved in accomplishing the task, as well as the medical and social issues which stem from the wealth of knowledge which the Human Genome Project will help create. To this end, speakers were brought together who represent the diverse areasmore » of expertise characteristic of this multidisciplinary project. The keynote speaker addresses the project`s motivations and goals in the larger context of biological and medical sciences. The first two sessions address relevant technical issues, data collection with a focus on high-throughput sequencing methods and data analysis with an emphasis on identification of coding sequences. The third session explores recent advances in the understanding of genetic diseases and possible routes to treatment. Finally, the last session addresses some of the ethical, social and legal issues which will undoubtedly arise from having a detailed knowledge of the human genome.« less

Los Alamos Science: The Human Genome Project. Number 20, 1992

DOE R&D Accomplishments Database

Cooper, N. G.; Shea, N. eds.

1992-01-01

This document provides a broad overview of the Human Genome Project, with particular emphasis on work being done at Los Alamos. It tries to emphasize the scientific aspects of the project, compared to the more speculative information presented in the popular press. There is a brief introduction to modern genetics, including a review of classic work. There is a broad overview of the Genome Project, describing what the project is, what are some of its major five-year goals, what are major technological challenges ahead of the project, and what can the field of biology, as well as society expect to see as benefits from this project. Specific results on the efforts directed at mapping chromosomes 16 and 5 are discussed. A brief introduction to DNA libraries is presented, bearing in mind that Los Alamos has housed such libraries for many years prior to the Genome Project. Information on efforts to do applied computational work related to the project are discussed, as well as experimental efforts to do rapid DNA sequencing by means of single-molecule detection using applied spectroscopic methods. The article introduces the Los Alamos staff which are working on the Genome Project, and concludes with brief discussions on ethical, legal, and social implications of this work; a brief glimpse of genetics as it may be practiced in the next century; and a glossary of relevant terms.

Genome Editing Redefines Precision Medicine in the Cardiovascular Field

PubMed Central

Lahm, Harald; Dreßen, Martina; Lange, Rüdiger; Wu, Sean M.; Krane, Markus

2018-01-01

Genome editing is a powerful tool to study the function of specific genes and proteins important for development or disease. Recent technologies, especially CRISPR/Cas9 which is characterized by convenient handling and high precision, revolutionized the field of genome editing. Such tools have enormous potential for basic science as well as for regenerative medicine. Nevertheless, there are still several hurdles that have to be overcome, but patient-tailored therapies, termed precision medicine, seem to be within reach. In this review, we focus on the achievements and limitations of genome editing in the cardiovascular field. We explore different areas of cardiac research and highlight the most important developments: (1) the potential of genome editing in human pluripotent stem cells in basic research for disease modelling, drug screening, or reprogramming approaches and (2) the potential and remaining challenges of genome editing for regenerative therapies. Finally, we discuss social and ethical implications of these new technologies. PMID:29731778

Asian public concern over the ethics of scientists: predictors and implications for research ethics.

PubMed

Smolak, Alex; Gorroochurn, Prakash; Kamarulzaman, Adeeba; Janjua, Nazli

2012-01-01

The following two research questions were examined in this study: 1) What is the public's level of concern with ethics in science; and 2) Are religious affiliation, religious involvement, and education predictors of that concern in Asia? The sample includes 7,963 men and women between the ages of 20 and 59 from ten Asian countries. An overall low level of relative concern toward ethics in science was reported. Lower educational attainment was associated with lower odds of concern. Christian religious affiliation and moderate religious involvement were also associated with lower odds of concern. This article highlights the importance of more active research into social perspectives on ethics in science.

Societal and ethical issues in human biomonitoring – a view from science studies

PubMed Central

Bauer, Susanne

2008-01-01

Background Human biomonitoring (HBM) has rapidly gained importance. In some epidemiological studies, the measurement and use of biomarkers of exposure, susceptibility and disease have replaced traditional environmental indicators. While in HBM, ethical issues have mostly been addressed in terms of informed consent and confidentiality, this paper maps out a larger array of societal issues from an epistemological perspective, i.e. bringing into focus the conditions of how and what is known in environmental health science. Methods In order to analyse the effects of HBM and the shift towards biomarker research in the assessment of environmental pollution in a broader societal context, selected analytical frameworks of science studies are introduced. To develop the epistemological perspective, concepts from "biomedical platform sociology" and the notion of "epistemic cultures" and "thought styles" are applied to the research infrastructures of HBM. Further, concepts of "biocitizenship" and "civic epistemologies" are drawn upon as analytical tools to discuss the visions and promises of HBM as well as related ethical problematisations. Results In human biomonitoring, two different epistemological cultures meet; these are environmental science with for instance pollution surveys and toxicological assessments on the one hand, and analytical epidemiology investigating the association between exposure and disease in probabilistic risk estimation on the other hand. The surveillance of exposure and dose via biomarkers as envisioned in HBM is shifting the site of exposure monitoring to the human body. Establishing an HBM platform faces not only the need to consider individual decision autonomy as an ethics issue, but also larger epistemological and societal questions, such as the mode of evidence demanded in science, policy and regulation. Conclusion The shift of exposure monitoring towards the biosurveillance of human populations involves fundamental changes in the ways

ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

PubMed Central

2014-01-01

Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELSI 2.0’ initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries. PMID:24944586

Controlling new knowledge: Genomic science, governance and the politics of bioinformatics

PubMed Central

Salter, Brian; Salter, Charlotte

2017-01-01

The rise of bioinformatics is a direct response to the political difficulties faced by genomics in its quest to be a new biomedical innovation, and the value of bioinformatics lies in its role as the bridge between the promise of genomics and its realization in the form of health benefits. Western scientific elites are able to use their close relationship with the state to control and facilitate the emergence of new domains compatible with the existing distribution of epistemic power – all within the embrace of public trust. The incorporation of bioinformatics as the saviour of genomics had to be integrated with the operation of two key aspects of governance in this field: the definition and ownership of the new knowledge. This was achieved mainly by the development of common standards and by the promotion of the values of communality, open access and the public ownership of data to legitimize and maintain the governance power of publicly funded genomic science. Opposition from industry advocating the private ownership of knowledge has been largely neutered through the institutions supporting the science-state concordat. However, in order for translation into health benefits to occur and public trust to be assured, genomic and clinical data have to be integrated and knowledge ownership agreed upon across the separate and distinct governance territories of scientist, clinical medicine and society. Tensions abound as science seeks ways of maintaining its control of knowledge production through the negotiation of new forms of governance with the institutions and values of clinicians and patients. PMID:28056721

Controlling new knowledge: Genomic science, governance and the politics of bioinformatics.

PubMed

Salter, Brian; Salter, Charlotte

2017-04-01

The rise of bioinformatics is a direct response to the political difficulties faced by genomics in its quest to be a new biomedical innovation, and the value of bioinformatics lies in its role as the bridge between the promise of genomics and its realization in the form of health benefits. Western scientific elites are able to use their close relationship with the state to control and facilitate the emergence of new domains compatible with the existing distribution of epistemic power - all within the embrace of public trust. The incorporation of bioinformatics as the saviour of genomics had to be integrated with the operation of two key aspects of governance in this field: the definition and ownership of the new knowledge. This was achieved mainly by the development of common standards and by the promotion of the values of communality, open access and the public ownership of data to legitimize and maintain the governance power of publicly funded genomic science. Opposition from industry advocating the private ownership of knowledge has been largely neutered through the institutions supporting the science-state concordat. However, in order for translation into health benefits to occur and public trust to be assured, genomic and clinical data have to be integrated and knowledge ownership agreed upon across the separate and distinct governance territories of scientist, clinical medicine and society. Tensions abound as science seeks ways of maintaining its control of knowledge production through the negotiation of new forms of governance with the institutions and values of clinicians and patients.

Yesterday's war; tomorrow's technology: peer commentary on 'Ethical, legal, social and policy issues in the use of genomic technologies by the US military'.

PubMed

Evans, Nicholas G; Moreno, Jonathan D

2015-02-01

A recent article by Maxwell J. Mehlman and Tracy Yeheng Li, in the Journal of Law and the Biosciences , sought to examine the ethical, legal, social, and policy issues associated with the use of genetic screening and germ-line therapies ('genomic technologies') by the US Military. In this commentary, we will elaborate several related matters: the relationship between genetic and non-genetic screening methods, the history of selection processes and force strength, and the consequences and ethics of, as Mehlman and Li suggest, engineering enhanced soldiers. We contend, first, that the strengths of genomic testing as a method of determining enrollment in the armed forces has limited appeal, given the state of current selection methods in the US armed forces. Second, that the vagaries of genetic selection, much like other forms of selection that do not bear causally or reliably on soldier performance (such as race, gender, and sexuality), pose a systematic threat to force strength by limiting the (valuable) diversity of combat units. Third, that the idea of enhancing warfighters through germ-line interventions poses serious ethical issues in terms of the control and ownership of 'enhancements' when members separate from service.

An Analysis of Ethics Laws, Compliance with Ethical Standards, and Ethical Core Competency within the Department of the Army

DTIC Science & Technology

2016-06-15

laws and ethical principles above private gain. (2) Employees shall not hold financial interests that conflict with the conscientious...applying ethical principles to decision-making. We analyze the DA ethics training courses, policies, and procedures. The project explores the...leveraging the Enterprises buying power to obtain goods and services more efficiently. Ms. Lyons earned her Bachelor of Science degree in Accounting in

Incorporating Genomics and Bioinformatics across the Life Sciences Curriculum

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

Ditty, Jayna L.; Kvaal, Christopher A.; Goodner, Brad

Undergraduate life sciences education needs an overhaul, as clearly described in the National Research Council of the National Academies publication BIO 2010: Transforming Undergraduate Education for Future Research Biologists. Among BIO 2010's top recommendations is the need to involve students in working with real data and tools that reflect the nature of life sciences research in the 21st century. Education research studies support the importance of utilizing primary literature, designing and implementing experiments, and analyzing results in the context of a bona fide scientific question in cultivating the analytical skills necessary to become a scientist. Incorporating these basic scientific methodologiesmore » in undergraduate education leads to increased undergraduate and post-graduate retention in the sciences. Toward this end, many undergraduate teaching organizations offer training and suggestions for faculty to update and improve their teaching approaches to help students learn as scientists, through design and discovery (e.g., Council of Undergraduate Research [www.cur.org] and Project Kaleidoscope [www.pkal.org]). With the advent of genome sequencing and bioinformatics, many scientists now formulate biological questions and interpret research results in the context of genomic information. Just as the use of bioinformatic tools and databases changed the way scientists investigate problems, it must change how scientists teach to create new opportunities for students to gain experiences reflecting the influence of genomics, proteomics, and bioinformatics on modern life sciences research. Educators have responded by incorporating bioinformatics into diverse life science curricula. While these published exercises in, and guidelines for, bioinformatics curricula are helpful and inspirational, faculty new to the area of bioinformatics inevitably need training in the theoretical underpinnings of the algorithms. Moreover, effectively integrating

Ethics in the classroom: a reflection on integrating ethical discussions in an introductory course in computer programming.

PubMed

Smolarski, D C; Whitehead, T

2000-04-01

In this paper, we describe our recent approaches to introducing students in a beginning computer science class to the study of ethical issues related to computer science and technology. This consists of three components: lectures on ethics and technology, in-class discussion of ethical scenarios, and a reflective paper on a topic related to ethics or the impact of technology on society. We give both student reactions to these aspects, and instructor perspective on the difficulties and benefits in exposing students to these ideas.

Alternative sources of pluripotency: science, ethics, and stem cells.

PubMed

Kastenberg, Zachary J; Odorico, Jon S

2008-07-01

Despite many advances in human embryonic stem cell (hESC) technology the ethical dilemma involving the destruction of a human embryo is one factor that has limited the development of hESC based clinical therapies. Two recent reports describing the production of pluripotent stem cells following the in vitro reprogramming of human somatic cells with certain defined factors illustrate one potential method of bypassing the ethical debate surrounding hESCs (Yu J, Vodyanik MA, Smuga-Otto K, et al. Induced pluripotent stem cell lines derived from human somatic cells. Science. 2007 Dec;318(5858):1917-1920; Takahashi K, Tanabe K, Ohnuki M, et al. Induction of pluripotent stem cells from adult human fibroblasts by defined factors. Cell. 2007 Nov;131(5): 861-872.). Other alternative methods include nuclear transfer, altered nuclear transfer, and parthenogenesis; each with its own set of advantages and disadvantages. This review discusses recent advances in these technologies with specific focus on the issues of embryo destruction, oocyte recovery, and the potential of each technology to produce large scale, patient specific cell transplantation therapies that would require little or no immunosuppression.

Art, Chaos, Ethics, and Science (ACES): a doctoring curriculum for emergency medicine.

PubMed

Van Groenou, Aneema A; Bakes, Katherine Mary

2006-11-01

ACES (Art, Chaos, Ethics, and Science) is a curriculum developed by 2 residents and a faculty mentor at the Denver Health Medical Center Emergency Medicine Residency Program. The goal of the ACES curriculum is 2-fold: (1) to discuss areas of clinical consequence typically outside the scope of the regular academic curriculum, such as ethical dilemmas and the challenges of professionalism; and (2) to encourage reflection on our roles as caregivers on a personal, public health, and political level. Each bimonthly "doctoring roundtable" session focuses on one of these goals, bringing local and national leaders in the field to the forum to enrich discussion. Attending physicians from academic and private settings within the residency, residents at all levels, rotating medical students, and, for the past year, emergency department nurses participate in the meetings. Thus far, regular voluntary participation has been the only measure of the ongoing program's success. In this descriptive article, we discuss the aim of the program, the curriculum, and how the ACES program enriches the residency's educational goals. Recent accreditation requirements for residency training programs mandate educational experiences that allow residents to demonstrate competency in professionalism and ethical principles. The ACES curriculum developed a unique niche in our residency, creating an open forum for passionate discussion of challenging clinical encounters, unpressured reflection on ethics and decisionmaking, and constructive personal and professional development.

Teaching the Ethical Aspects of Environmental Science

NASA Astrophysics Data System (ADS)

Palinkas, C. M.

2014-12-01

Environmental and societal issues are often inherently linked, especially in coastal and estuarine environments, and science and social values must often be balanced in ecosystem management and decision-making. A new seminar course has been developed for the Marine Estuarine and Environmental Science (MEES) graduate program, an inter-institutional program within the University System of Maryland, to examine these issues. This 1-credit course, offered for the first time in Spring 2015, takes a complex systems perspective on major environmental and societal challenges to examine these linked issues in a variety of contexts. After a brief introduction to the emerging field of "geoethics," students develop a list of issues to examine throughout the seminar. Example topics could include fracking, offshore wind technology, dam removal, and iron fertilization, among others. A case-study approach is taken, with each class meeting focusing on one issue. For each case study, students are asked to 1) identify relevant scientific principles and major knowledge gaps, 2) predict potential outcomes, 3) identify stakeholders and likely viewpoints, and 4) construct communication plans to disseminate findings to these stakeholders. At the end of the semester, students give a brief presentation of the ethical aspects of their own research topics.

Los Alamos Science: The Human Genome Project. Number 20, 1992

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

Cooper, N G; Shea, N

1992-01-01

This article provides a broad overview of the Human Genome Project, with particular emphasis on work being done at Los Alamos. It tries to emphasize the scientific aspects of the project, compared to the more speculative information presented in the popular press. There is a brief introduction to modern genetics, including a review of classic work. There is a broad overview of the Genome Project, describing what the project is, what are some of its major five-year goals, what are major technological challenges ahead of the project, and what can the field of biology, as well as society expect tomore » see as benefits from this project. Specific results on the efforts directed at mapping chromosomes 16 and 5 are discussed. A brief introduction to DNA libraries is presented, bearing in mind that Los Alamos has housed such libraries for many years prior to the Genome Project. Information on efforts to do applied computational work related to the project are discussed, as well as experimental efforts to do rapid DNA sequencing by means of single-molecule detection using applied spectroscopic methods. The article introduces the Los Alamos staff which are working on the Genome Project, and concludes with brief discussions on ethical, legal, and social implications of this work; a brief glimpse of genetics as it may be practiced in the next century; and a glossary of relevant terms.« less

The use of ethical frameworks by students following a new science course for 16 18 year-olds

NASA Astrophysics Data System (ADS)

Reiss, Michael

2008-09-01

There has been a move in recent years towards the greater inclusion of social and ethical issues within science courses. This paper examines a new context-based course for 16 18 year-olds (Salters-Nuffield Advanced Biology) who are studying biology in England and Wales. The course is taught through contexts and has an emphasis on social issues and the development of ethical reasoning. Examination of a sample of reports written by students in 2005 as part of the course’s summative assessment shows that utilitarian ethical reasoning is used widely and that the other ethical frameworks to which students are introduced in the course—rights and duties, autonomy and virtue ethics—are used substantially less often. In addition, students mostly argue anthropocentrically though many of them argue ecocentrically and/or biocentrically too.

Professional Ethics for Astronomers

NASA Astrophysics Data System (ADS)

Marvel, K. B.

2005-05-01

There is a growing recognition that professional ethics is an important topic for all professional scientists, especially physical scientists. Situations at the National Laboratories have dramatically proven this point. Professional ethics is usually only considered important for the health sciences and the legal and medical professions. However, certain aspects of the day to day work of professional astronomers can be impacted by ethical issues. Examples include refereeing scientific papers, serving on grant panels or telescope allocation committees, submitting grant proposals, providing proper references in publications, proposals or talks and even writing recommendation letters for job candidates or serving on search committees. This session will feature several speakers on a variety of topics and provide time for questions and answers from the audience. Confirmed speakers include: Kate Kirby, Director Institute for Theoretical Atomic and Molecular Physics - Professional Ethics in the Physical Sciences: An Overview Rob Kennicutt, Astrophysical Journal Editor - Ethical Issues for Publishing Astronomers Peggy Fischer, Office of the NSF Inspector General - Professional Ethics from the NSF Inspector General's Point of View

Multimedia Presentations on the Human Genome: Implementation and Assessment of a Teaching Program for the Introduction to Genome Science Using a Poster and Animations

ERIC Educational Resources Information Center

Kano, Kei; Yahata, Saiko; Muroi, Kaori; Kawakami, Masahiro; Tomoda, Mari; Miyaki, Koichi; Nakayama, Takeo; Kosugi, Shinji; Kato, Kazuto

2008-01-01

Genome science, including topics such as gene recombination, cloning, genetic tests, and gene therapy, is now an established part of our daily lives; thus we need to learn genome science to better equip ourselves for the present day. Learning from topics directly related to the human has been suggested to be more effective than learning from…

[Scientific ethics and the use of human material or data].

PubMed

Valenzuela, Carlos Y

2012-03-01

A scientific article censured by superposing obstacles to its reading remembers the censure of Galileo made by the Inquisition. The censure followed the failure to obtain the informed consent (IC) to disclose results of old samples. At present, the use of collected data or samples for a new research needs a new IC, in most ethical protocols. The Helsinki Code allows the research ethics committees the authorization for the use of that information. This norm is founded rather in commercial, legal or protective arguments than in ethical bases. This article criticizes this norm from the Scientific Ethics viewpoint because: i) the ownership of the genome and environment that originate a person is not of such person but of the human society and Homo sapiens species, ii) a person is not the unique owner of that information; laboratories, institutions, health services and research teams add constituents to it, iii) several violations to this norm occurring in medical, labor, legal and social practice show it as biased against science, iv) if this stored information and its use are beneficial for humankind (its proper owner) it is ethically obligatory to use it. It is proposed to create an anonymous World Bank for Human Information with open access and universal transparency. This universal collection of data handled under universal accepted ethical norms should prevent exclusive private use of public information, non-publication of negative results, illicit and unethical use of human data.

Towards a CRISPR view of early human development: applications, limitations and ethical concerns of genome editing in human embryos.

PubMed

Plaza Reyes, Alvaro; Lanner, Fredrik

2017-01-01

Developmental biologists have become increasingly aware that the wealth of knowledge generated through genetic studies of pre-implantation mouse development might not easily be translated to the human embryo. Comparative studies have been fueled by recent technological advances in single-cell analysis, allowing in-depth analysis of the human embryo. This field could shortly gain more momentum as novel genome editing technologies might, for the first time, also allow functional genetic studies in the human embryo. In this Spotlight article, we summarize the CRISPR-Cas9 genome editing system and discuss its potential applications and limitations in human pre-implantation embryos, and the ethical considerations thereof. © 2017. Published by The Company of Biologists Ltd.

Ethics and mental illness research.

PubMed

Roberts, Laura Weiss

2002-09-01

There are many tasks ahead in the area of ethics and mental illness research. We face unknown challenges in psychiatric genetics projects, studies of psychopharmacological interventions in children, controversial scientific designs (e.g., symptom challenge, medication-free interval), and cross-disciplinary research incorporating goals and methods of health services, epidemiology, and social and behavioral science endeavors. Boundaries between innovative clinical practices and research-related experimentation will become increasingly difficult to distinguish, as will the roles between clinicians, clinical researchers, and basic scientists. Moreover, the institutions and systems in which research occurs are being rapidly and radically revised, raising new questions about oversight responsibilities and standards. Our ability to identify and respond to the ethical questions arising in this uncharted territory will depend on our willingness to self-reflect, to integrate the observations and insights of the past century, to think with great clarity, and to anticipate novel ethical problems that keep company with scientific advancements. It will also depend on data. Empirical study of ethical dimensions of human research is essential to anchor and attune the intuitions and theoretical constructs that we develop. Science and ethics have changed over the past 100 years, as they will over the next century. It is ironic that the ethical acceptability of psychiatric research is so much in question at this time, when it holds so much promise for advancing our understanding of mental illness and its treatment. The tension between the duty to protect vulnerable individuals and the duty to perform human science will continue to grow, as long as ethics and science are seen as separable, opposing forces with different aims championed by different heroes. The profession of psychiatry is poised to move toward a new, more coherent research ethics paradigm in which scientific and

Genome editing: Bioethics shows the way.

PubMed

Neuhaus, Carolyn P; Caplan, Arthur L

2017-03-01

When some scientists hear the word "bioethics," they break out in intellectual hives. They shouldn't. Good bioethics is about enabling science to move forward. Bioethics pushes scientists to acknowledge that they operate not within a vacuum but within a society in which diverse perspectives and values must be engaged. Bioethicists give voice to those divergent perspectives and provide a framework to facilitate informed and inclusive discussions that spur progress, rather than stall it. The field is needed to advance cutting-edge biomedical research in domains in which the benefits to be had are enormous, such as genome editing, but ethical concerns persist.

Determination of Pre-Service Science Teachers' Level of Awareness of Environmental Ethics in Relation to Different Variables

ERIC Educational Resources Information Center

Keles, Özgül; Özer, Nilgün

2016-01-01

The purpose of the current study is to determine the pre-service science teachers' awareness levels of environmental ethics in relation to different variables. The sampling of the present study is comprised of 1,023 third and fourth year pre-service science teachers selected from 12 different universities in the spring term of 2013-2014 academic…

Engineering Ethics Education Having Reflected Various Values and a Global Code of Ethics

NASA Astrophysics Data System (ADS)

Kanemitsu, Hidekazu

At the present day, a movement trying to establish a global code of ethics for science and engineering is in activity. The author overviews the context of this movement, and examines the possibility of engineering ethics education which uses global code of ethics. In this paper, the engineering ethics education which uses code of ethics in general will be considered, and an expected function of global code of ethics will be also. Engineering ethics education in the new century should be aimed to share the values among different countries and cultures. To use global code of ethics as a tool for such education, the code should include various values, especially Asian values which engineering ethics has paid little attention to.

The Historical Basis of Engineering Ethics

NASA Astrophysics Data System (ADS)

Furuya, Keiichi

There are different objects and motives between scientists and engineers. Science is to create new knowledge (episteme), while technology (techne) is to create new utility. Both types of social responsibility are required for engineer, because modern technology is tightly connected with science. The relationship between ethics for scientists and engineers is discussed as an evolution of ethical objects. A short history of engineering societies in U.S.A. and Japan are introduced with their ethical perspectives. As a conclusion, respect for fundamental rights for existence of those who stand in, with, and around engineers and their societies is needed for better engineering ethics.

Unesco's Global Ethics Observatory

PubMed Central

Have, H ten; Ang, T W

2007-01-01

The Global Ethics Observatory, launched by the United Nations Educational, Scientific, and Cultural Organization in December 2005, is a system of databases in the ethics of science and technology. It presents data on experts in ethics, on institutions (university departments and centres, commissions, councils and review boards, and societies and associations) and on teaching programmes in ethics. It has a global coverage and will be available in six major languages. Its aim is to facilitate the establishment of ethical infrastructures and international cooperation all around the world. PMID:17209103

The burgeoning science of genetics and the impact on public policy.

PubMed

Hatch, Orrin G

2004-01-01

The legislative branch of government often wrestles with the challenges of public policy issues in the health care area that raise multi-dimensional questions that cut across disciplines of science, law, economics, and ethics. Sometimes the purely scientific issues can be confounding by themselves. This article highlights some key policy issues that require consideration in the post-genome era.

Balancing Benefits and Risks of Immortal Data: Participants’ Views of Open Consent in the Personal Genome Project

PubMed Central

Zarate, Oscar A.; Brody, Julia Green; Brown, Phil; Ramírez-Andreotta, Mónica D.; Perovich, Laura; Matz, Jacob

2016-01-01

The NIH Genomic Data Sharing Policy, effective in January 2015, encourages researchers to obtain broad consent to share data for unspecified biomedical research. The ethics of extensive data sharing depend in part on study participants’ understanding of the risks and benefits. Interviews with participants in the Personal Genome Project show that study participants can readily discuss the risks, including loss of privacy, and are willing to accept risks because they value the opportunity to contribute to health science. They have expansive views of the benefits for science, medicine, and their own health and curiosity. With justice in mind, further exploration is needed to evaluate consent for data sharing among more diverse and vulnerable populations. PMID:26678513

Ethical Legal and Social Issues of Biobanking: Past, Present, and Future.

PubMed

Bledsoe, Marianna J

2017-04-01

The past 15 years has seen considerable changes in the research environment. These changes include the development of new sophisticated genetic and genomic technologies, a proliferation of databases containing large amount of genotypic and phenotypic data, and wide-spread data sharing among many institutions, nationally and internationally. These changes have raised new questions regarding how best to protect the participants of biobanking research. In response to these questions, best practices for addressing the legal, ethical, and social issues of biobanking have been developed. In addition, new ethical guidelines related to biobanking have been established, as well as new regulations regarding privacy and human subject protections. Finally, changes in the science and the research environment have raised complex ethical issues related to biobanking, such as questions about the most appropriate consent models to use for biobanking research, commercial use and ownership issues, and whether and how to return individual research results to biobank participants. This article reviews some of the developments over the past 15 years related to the ELSI of biobanking with a look toward the future.

Ethical decision making in the conduct of research: role of individual, contextual and organizational factors. Commentary on "Science, human nature, and a new paradigm for ethics education".

PubMed

Langlais, Philip J

2012-09-01

Despite the importance of scientific integrity to the well-being of society, recent findings suggest that training and mentoring in the responsible conduct of research are not very reliable or effective inhibitors of research misbehavior. Understanding how and why individual scientists decide to behave in ways that conform to or violate norms and standards of research is essential to the development of more effective training programs and the creation of more supportive environments. Scholars in business management, psychology, and other disciplines have identified many important factors that affect ethical behavior, including individual, contextual, and organizational factors. Surprisingly little research has been conducted to examine the role of these factors in either the development of ethical decision-making skills, or their applicability to ethical issues commonly encountered in research and other scholarly and professional activities. Interdisciplinary approaches combined with research and discipline relevant paradigms should greatly enhance understanding of the individual contextual and organizational factors involved in ethical and unethical research conduct. Such studies will inform and facilitate the development of more effective ethics education programs in the sciences and engineering professions.

Using "Ethics Labs" to Set a Framework for Ethical Discussion in an Undergraduate Science Course

ERIC Educational Resources Information Center

Smith, Kelly; Wueste, Daniel; Frugoli, Julia

2007-01-01

Teaching ethics across the curriculum is a strategy adopted by many universities. One of the fundamental aims of teaching ethics across the curriculum is to get students to see ethics as truly relevant to the subjects they are studying. Ideally, students will come to see that ethics is a thread woven deeply in the fabric of all knowledge and…

The Ethical Implications of Cultural Intervention by Space-faring Civilizations -- What Science Fiction Has to Say

NASA Astrophysics Data System (ADS)

Ciupa, M.

Science fiction (Scifi) plays out the concerns of our possible scientistic futures; it is a source for exploring the deep rooted psychological concerns of mankind with science and the humanities. In this paper it is proposed Scifi is a valid source of hypotheses to examine, not as "evidence", but as candidate ­ often cautionary ­ notions, i.e., scenarios to be studied. Scifi represents a kind of Jungian mythological based story-telling, putting forward tales that express our conscious/unconscious concerns. Thus, when looking into ethical questions like, "where will techno-progressive futures take us?", we import into them these archetypes, hopes and fears, as a result they frequently reappear as familiar tropes. In this respect it is appropriate not to ignore them, but to openly challenge/appreciate them: to see what scenarios are indeed likely and how they may impact us reciprocally. This paper examines some of these aspects, and provides examples of how they are represented in the Scifi genre, in particular with consideration of the ethical implications of cultural intervention by space-faring civilizations. Given the specific analysis/examples provided, it concludes with an ethical scenario analysis (a dialectic argument), within the limiting conditions of the Drake Equation, Fermi Paradox and Cultural History. It comments on the potential existential risk of the Active SETI programmes recently initiated, indeed the need for an ethical exosociological review of all proposed Interstellar projects that express an "Intervention-Propensity".

Medical Ethics Training: A Clinical Partnership.

ERIC Educational Resources Information Center

Thomasma, David C.

1979-01-01

The ethics training program at the University of Tennessee Center for the Health Sciences involves a four-way dialogue among clinical faculty and house staff, ethics faculty and fellows, the medical students, and philosophy ethics students. The program's clinical basis allows participants to become sophisticated about ethical issues in practice.…

Is there a need for a code of ethics in science communication and Communicating Uncertainties on Climate Change?

NASA Astrophysics Data System (ADS)

Cegnar, T.; Benestad, R.; Billard, C.

2010-09-01

The EMS Media team recognises that: Scientific knowledge is valuable for society, but it also becomes fragile in a media-dominated society where the distortion of facts clouds the validity of the information. The use of scientific titles in communication normally brings expectations of high standards regarding the information content. Freedom of speech is fragile in the sense that it can be diluted by a high proportion of false information. The value of scientific and scholastic titles is degraded when they are used to give the impression of false validity. Science communication is powerful, and implies a certain responsibility and ethical standard. The scientific community operates with a more or less tacit ethics code in all areas touching the scientists' activities. Even though many scientific questions cannot be completely resolved, there is a set of established and unequivocal scientific practices, methods, and tests, on which our scientific knowledge rests. Scientists are assumed to master the scientific practices, methods, and tests. High standard in science-related communication and media exposure, openness, and honesty will increase the relevance of science, academies, and scientists in the society, in addition to benefiting the society itself. Science communication is important to maintain and enhance the general appreciation of science. The value of the role of science is likely to increase with a reduced distance between scientists and the society and a lower knowledge barrier. An awareness about the ethical aspects of science and science communication may aid scientists in making decisions about how and what to say. Scientists are often not trained in communication or ethics. A set of guide lines may lower the barrier for scientists concerned about tacit codes to come forward and talk to the media. Recommendations: The mass media should seek more insight into scientific knowledge, history, principles, and societies. Journalists and artists should be

Editing the human genome: where ART and science intersect.

PubMed

Hershlag, Avner; Bristow, Sara L

2018-06-07

The rapid development of gene-editing technologies has led to an exponential rise in both basic and translational research initiatives studying molecular processes and investigating possible clinical applications. Early experiments using genome editing to study human embryo development have contradicted findings in studies on model organisms. Additionally, a series of four experiments over the past 2 years set out to investigate the possibilities of introducing genetic modifications to human embryos, each with varying levels of success. Here, we discuss the key findings of these studies, including the efficiency, the safety, the potential untoward effects, major flaws of the studies, and emerging alternative genome editing methods that may allow overcoming the hurdles encountered so far. Given these results, we also raise several questions about the clinical utilization of germline gene editing: For which indications is gene editing appropriate? How do gene-editing technologies compare with genetic testing methods currently used for screening embryos? What are the ethical considerations we should be concerned about? While further research is underway, and our understanding of how to implement this technology continues to evolve, it is critical to contemplate if and how it should be translated from the bench to clinical practice.

What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and Consortia Ethics? The Importance of Trustworthiness.

PubMed

Dove, Edward S; Özdemir, Vural

2015-09-01

The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also raise predicaments at the interface of law, human rights, and bioethics. In this article, we examine one such double-edged practice: the growing, multivariate exploitation of Big Data in the health sector, particularly by the private sector. Commercial exploitation of health data for knowledge-based products is a key aspect of the bioeconomy and is also a topic of concern among publics around the world. It is exacerbated in the current age of globally interconnected consortia science and consortia ethics, which is characterized by accumulating epistemic proximity, diminished academic independence, "extreme centrism", and conflicted/competing interests among innovation actors. Extreme centrism is of particular importance as a new ideology emerging from consortia science and consortia ethics; this relates to invariably taking a middle-of-the-road populist stance, even in the event of human rights breaches, so as to sustain the populist support needed for consortia building and collective innovation. What role do law, human rights, and bioethics-separate and together-have to play in addressing these predicaments and opportunities in early 21st century science and society? One answer we propose is an intertwined ethico-legal normative construct, namely trustworthiness . By considering trustworthiness as a central pillar at the intersection of law, human rights, and bioethics, we enable others to trust us, which in turns allows different actors (both nonprofit and for-profit) to operate more justly in consortia science and ethics, as well as to access and responsibly use health data for public benefit.

What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and Consortia Ethics? The Importance of Trustworthiness

PubMed Central

Dove, Edward S.; Özdemir, Vural

2015-01-01

The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also raise predicaments at the interface of law, human rights, and bioethics. In this article, we examine one such double-edged practice: the growing, multivariate exploitation of Big Data in the health sector, particularly by the private sector. Commercial exploitation of health data for knowledge-based products is a key aspect of the bioeconomy and is also a topic of concern among publics around the world. It is exacerbated in the current age of globally interconnected consortia science and consortia ethics, which is characterized by accumulating epistemic proximity, diminished academic independence, “extreme centrism”, and conflicted/competing interests among innovation actors. Extreme centrism is of particular importance as a new ideology emerging from consortia science and consortia ethics; this relates to invariably taking a middle-of-the-road populist stance, even in the event of human rights breaches, so as to sustain the populist support needed for consortia building and collective innovation. What role do law, human rights, and bioethics—separate and together—have to play in addressing these predicaments and opportunities in early 21st century science and society? One answer we propose is an intertwined ethico-legal normative construct, namely trustworthiness. By considering trustworthiness as a central pillar at the intersection of law, human rights, and bioethics, we enable others to trust us, which in turns allows different actors (both nonprofit and for-profit) to operate more justly in consortia science and ethics, as well as to access and responsibly use health data for public benefit. PMID:26345196

Ethics and the Unintended Consequences of Social Research: A Perspective from the Sociology of Science

ERIC Educational Resources Information Center

Studer, Kenneth E.; Chubin, Daryl E.

1977-01-01

Argues that "successful" social science requires development of a social ethic or sense of research responsibility, and suggests that an individualistic orientation is ineffective in coping with the unintended consequences of social research. Available from: Elsevier Scientific Publishing Company, Box 211, Amsterdam, the Netherlands, single copies…

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

PubMed

Monteverde, Settimio

2014-06-01

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

A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research.

PubMed

de Vries, Jantina; Abayomi, Akin; Brandful, James; Littler, Katherine; Madden, Ebony; Marshall, Patricia; Ouwe Missi Oukem-Boyer, Odile; Seeley, Janet

2014-08-07

The rise of genomic studies in Africa - not least due to projects funded under H3Africa - is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines. The first challenge we identified relates to the moral status of cells living in culture. There is no doubt that cells in culture are alive, and the question is how this characteristic is relevant to ethical decision-making. The second challenge relates to the fact that cells in culture are a source of cell products and mitochondrial DNA. In combination with other technologies, cells in culture could also be used to grow human tissue. Whilst on the one hand, this feature increases the potential utility of the sample and promotes science, on the other it also enables further scientific work that may not have been specifically consented to or approved. The third challenge relates to ownership over samples, particularly in cases where cell lines are created by a biobank, and in a different country than where samples were collected. Relevant questions here concern the export of samples, approval of secondary use and the acceptability of commercialisation. A fourth challenge relates to perceptions of blood and bodily integrity, which may be particularly relevant for African research participants from certain cultures or backgrounds. Finally, we discuss challenges around informed consent and ethical review. In this paper, we sought to map the myriad of ethical challenges that need to be considered prior to making cell line creation a reality in the H3Africa project. Considering the relative novelty of this practice in Africa, such challenges will need to be considered, discussed and potentially be resolved before cell line creation in Africa becomes financially feasible and

Ethics in research.

PubMed

Bevan, Joan C

2007-04-01

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

The Physician's Role in Ethical Decisions

ERIC Educational Resources Information Center

Chevalier, Robert B.

1977-01-01

Many medical issues today require ethical as well as strictly medical decisions. Described is the need for the inclusion of medical ethics in the schools, beginning with science ethics in the secondary level and continuing through medical school. (MA)

The Need for Social Ethics in Interdisciplinary Environmental Science Graduate Programs: Results from a Nation-Wide Survey in the United States.

PubMed

Hall, Troy E; Engebretson, Jesse; O'Rourke, Michael; Piso, Zach; Whyte, Kyle; Valles, Sean

2017-04-01

Professionals in environmental fields engage with complex problems that involve stakeholders with different values, different forms of knowledge, and contentious decisions. There is increasing recognition of the need to train graduate students in interdisciplinary environmental science programs (IESPs) in these issues, which we refer to as "social ethics." A literature review revealed topics and skills that should be included in such training, as well as potential challenges and barriers. From this review, we developed an online survey, which we administered to faculty from 81 United States colleges and universities offering IESPs (480 surveys were completed). Respondents overwhelmingly agreed that IESPs should address values in applying science to policy and management decisions. They also agreed that programs should engage students with issues related to norms of scientific practice. Agreement was slightly less strong that IESPs should train students in skills related to managing value conflicts among different stakeholders. The primary challenges to incorporating social ethics into the curriculum were related to the lack of materials and expertise for delivery, though challenges such as ethics being marginalized in relation to environmental science content were also prominent. Challenges related to students' interest in ethics were considered less problematic. Respondents believed that social ethics are most effectively delivered when incorporated into existing courses, and they preferred case studies or problem-based learning for delivery. Student competence is generally not assessed, and respondents recognized a need for both curricular materials and assessment tools.

Comparison of cross culture engineering ethics training using the simulator for engineering ethics education.

PubMed

Chung, Christopher

2015-04-01

This paper describes the use and analysis of the Simulator for Engineering Ethics Education (SEEE) to perform cross culture engineering ethics training and analysis. Details describing the first generation and second generation development of the SEEE are published in Chung and Alfred, Science and Engineering Ethics, vol. 15, 2009 and Alfred and Chung, Science and Engineering Ethics, vol. 18, 2012. In this effort, a group of far eastern educated students operated the simulator in the instructional, training, scenario, and evaluation modes. The pre and post treatment performance of these students were compared to U.S. Educated students. Analysis of the performance indicated that the far eastern educated student increased their level of knowledge 23.7 percent while U.S. educated students increased their level of knowledge by 39.3 percent.

Genome Science and Personalized Cancer Treatment (LBNL Summer Lecture Series)

ScienceCinema

Gray, Joe [Lawrence Berkeley National Lab. (LBNL), Berkeley, CA (United States). Life Sciences Division and Associate Lab. Director for Life and Environmental Sciences

2018-05-04

Summer Lecture Series 2009: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

Integrating Ethics into the Social Studies Curriculum.

ERIC Educational Resources Information Center

Howe, Kenneth R.

1991-01-01

Urges incorporation of ethics into social studies curriculum. Provides an overview of ethical theory including principle-based theories of utilitarianism and deontology and virtue-based theories. Discusses philosophies of social science including positivism, interpretivism, and critical social science. Suggests teaching methods and curriculum…

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

ERIC Educational Resources Information Center

Warrell, Jacqueline G.; Jacobsen, Michele

2014-01-01

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

What are applied ethics?

PubMed

Allhoff, Fritz

2011-03-01

This paper explores the relationships that various applied ethics bear to each other, both in particular disciplines and more generally. The introductory section lays out the challenge of coming up with such an account and, drawing a parallel with the philosophy of science, offers that applied ethics may either be unified or disunified. The second section develops one simple account through which applied ethics are unified, vis-à-vis ethical theory. However, this is not taken to be a satisfying answer, for reasons explained. In the third section, specific applied ethics are explored: biomedical ethics; business ethics; environmental ethics; and neuroethics. These are chosen not to be comprehensive, but rather for their traditions or other illustrative purposes. The final section draws together the results of the preceding analysis and defends a disunity conception of applied ethics.

Incorporating global components into ethics education.

PubMed

Wang, George; Thompson, Russell G

2013-03-01

Ethics is central to science and engineering. Young engineers need to be grounded in how corporate social responsibility principles can be applied to engineering organizations to better serve the broader community. This is crucial in times of climate change and ecological challenges where the vulnerable can be impacted by engineering activities. Taking a global perspective in ethics education will help ensure that scientists and engineers can make a more substantial contribution to development throughout the world. This paper presents the importance of incorporating the global and cross culture components in the ethic education. The authors bring up a question to educators on ethics education in science and engineering in the globalized world, and its importance, necessity, and impendency. The paper presents several methods for discussion that can be used to identify the differences in ethics standards and practices in different countries; enhance the student's knowledge of ethics in a global arena.

A Study of the Relationship Between Nurses' Professional Self-Concept and Professional Ethics in Hospitals Affiliated to Jahrom University of Medical Sciences, Iran.

PubMed

Parandavar, Nehleh; Rahmanian, Afifeh; Badiyepeymaie Jahromi, Zohreh

2015-07-31

Commitment to ethics usually results in nurses' better professional performance and advancement. Professional self-concept of nurses refers to their information and beliefs about their roles, values, and behaviors. The objective of this study is to analyze the relationship between nurses' professional self-concept and professional ethics in hospitals affiliated to Jahrom University of Medical Sciences. This cross sectional-analytical study was conducted in 2014. The 270 participants were practicing nurses and head-nurses at the teaching hospitals of Peimanieh and Motahari in Jahrom University of Medical Science. Sampling was based on sencus method. Data was collected using Cowin's Nurses' self-concept questionnaire (NSCQ) and the researcher-made questionnaire of professional ethics. The average of the sample's professional self-concept score was 6.48±0.03 out of 8. The average of the sample's commitment to professional ethics score was 4.08±0.08 out of 5. Based on Pearson's correlation test, there is a significant relationship between professional ethics and professional self-concept (P=0.01, r=0.16). In view of the correlation between professional self-concept and professional ethics, it is recommended that nurses' self-concept, which can boost their commitment to ethics, be given more consideration.

A Study of the Relationship Between Nurses’ Professional Self-Concept and Professional Ethics in Hospitals Affiliated to Jahrom University of Medical Sciences, Iran

PubMed Central

Parandavar, Nehleh; Rahmanian, Afifeh; Jahromi, Zohreh Badiyepeymaie

2016-01-01

Background: Commitment to ethics usually results in nurses’ better professional performance and advancement. Professional self-concept of nurses refers to their information and beliefs about their roles, values, and behaviors. The objective of this study is to analyze the relationship between nurses’ professional self-concept and professional ethics in hospitals affiliated to Jahrom University of Medical Sciences. Methods: This cross sectional-analytical study was conducted in 2014. The 270 participants were practicing nurses and head-nurses at the teaching hospitals of Peimanieh and Motahari in Jahrom University of Medical Science. Sampling was based on sencus method. Data was collected using Cowin's Nurses’ self-concept questionnaire (NSCQ) and the researcher-made questionnaire of professional ethics. Results: The average of the sample's professional self-concept score was 6.48±0.03 out of 8. The average of the sample's commitment to professional ethics score was 4.08±0.08 out of 5. Based on Pearson's correlation test, there is a significant relationship between professional ethics and professional self-concept (P=0.01, r=0.16). Conclusion: In view of the correlation between professional self-concept and professional ethics, it is recommended that nurses’ self-concept, which can boost their commitment to ethics, be given more consideration. PMID:26573035

Teaching heroics: Identity and ethical imagery in science education

NASA Astrophysics Data System (ADS)

Robeck, Edward C.

themes of separation and boundary imagery, perpetuates relations of divisive bias. To forestall this, I suggest that science education can be approached in ways that incorporate what is referred to as an ethic of plenishment, which strives to promote expansive identities through a proliferation of interpersonal associations.

Ethics across the computer science curriculum: privacy modules in an introductory database course.

PubMed

Appel, Florence

2005-10-01

This paper describes the author's experience of infusing an introductory database course with privacy content, and the on-going project entitled Integrating Ethics Into the Database Curriculum, that evolved from that experience. The project, which has received funding from the National Science Foundation, involves the creation of a set of privacy modules that can be implemented systematically by database educators throughout the database design thread of an undergraduate course.

Integrating ethics into technical courses: micro-insertion.

PubMed

Davis, Michael

2006-10-01

Perhaps the most common reason science and engineering faculty give for not including 'ethics' (that is, research ethics, engineering ethics, or some discussion of professional responsibility) in their technical classes is that 'there is no room'. This article 1) describes a technique ('micro-insertion') that introduces ethics (and related topics) into technical courses in small enough units not to push out technical material, 2) explains where this technique might fit into the larger undertaking of integrating ethics into the technical (scientific or engineering) curriculum, and 3) concludes with some quantified evidence (collected over more than a decade) suggesting success. Integrating ethics into science and engineering courses is largely a matter of providing context for what is already being taught, context that also makes the material already being taught seem 'more relevant'.

Is there room for ethics within bioinformatics education?

PubMed

Taneri, Bahar

2011-07-01

When bioinformatics education is considered, several issues are addressed. At the undergraduate level, the main issue revolves around conveying information from two main and different fields: biology and computer science. At the graduate level, the main issue is bridging the gap between biology students and computer science students. However, there is an educational component that is rarely addressed within the context of bioinformatics education: the ethics component. Here, a different perspective is provided on bioinformatics education, and the current status of ethics is analyzed within the existing bioinformatics programs. Analysis of the existing undergraduate and graduate programs, in both Europe and the United States, reveals the minimal attention given to ethics within bioinformatics education. Given that bioinformaticians speedily and effectively shape the biomedical sciences and hence their implications for society, here redesigning of the bioinformatics curricula is suggested in order to integrate the necessary ethics education. Unique ethical problems awaiting bioinformaticians and bioinformatics ethics as a separate field of study are discussed. In addition, a template for an "Ethics in Bioinformatics" course is provided.

Applications of Genome-based Science in Shaping Citrus Industries of the World (JGI Seventh Annual User Meeting, 2012: Genomics of Energy and Environment)

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

Gmitter, Jr., Fred; Rokhsar, Dan

Fred Gmitter from the University of Florida on "Applications of Genome-based Science in Shaping the Future of the World's Citrus Industries" at the 7th Annual Genomics of Energy & Environment Meeting on March 21, 2012 in Walnut Creek, California.

Applications of Genome-based Science in Shaping Citrus Industries of the World (JGI Seventh Annual User Meeting, 2012: Genomics of Energy and Environment)

ScienceCinema

Gmitter, Jr., Fred; Rokhsar, Dan

2018-02-16

Fred Gmitter from the University of Florida on "Applications of Genome-based Science in Shaping the Future of the World's Citrus Industries" at the 7th Annual Genomics of Energy & Environment Meeting on March 21, 2012 in Walnut Creek, California.

Genome-environment interactions and prospective technology assessment: evolution from pharmacogenomics to nutrigenomics and ecogenomics.

PubMed

Ozdemir, Vural; Motulsky, Arno G; Kolker, Eugene; Godard, Béatrice

2009-02-01

The relationships between food, nutrition science, and health outcomes have been mapped over the past century. Genomic variation among individuals and populations is a new factor that enriches and challenges our understanding of these complex relationships. Hence, the confluence of nutritional science and genomics-nutrigenomics--was the focus of the OMICS: A Journal of Integrative Biology in December 2008 (Part 1). The 2009 Special Issue (Part 2) concludes the analysis of nutrigenomics research and innovations. Together, these two issues expand the scope and depth of critical scholarship in nutrigenomics, in keeping with an integrated multidisciplinary analysis across the bioscience, omics technology, social, ethical, intellectual property and policy dimensions. Historically, the field of pharmacogenetics provided the first examples of specifically identifiable gene variants predisposing to unexpected responses to drugs since the 1950s. Brewer coined the term ecogenetics in 1971 to broaden the concept of gene-environment interactions from drugs and nutrition to include environmental agents in general. In the mid-1990s, introduction of high-throughput technologies led to the terms pharmacogenomics, nutrigenomics and ecogenomics to describe, respectively, the contribution of genomic variability to differential responses to drugs, food, and environment defined in the broadest sense. The distinctions, if any, between these newer fields (e.g., nutrigenomics) and their predecessors (e.g., nutrigenetics) remain to be delineated. For nutrigenomics, its reliance on genome-wide analyses may lead to detection of new biological mechanisms governing host response to food. Recognizing "genome-environment interactions" as the conceptual thread that connects and runs through pharmacogenomics, nutrigenomics, and ecogenomics may contribute toward anticipatory governance and prospective real-time analysis of these omics fields. Such real-time analysis of omics technologies and

Towards an ethics safe harbor for global biomedical research

PubMed Central

Dove, Edward S.; Knoppers, Bartha M.; Zawati, Ma'n H.

2014-01-01

Although increasingly global, data-driven genomics and other ‘omics’-focused research hold great promise for health discoveries, current research ethics review systems around the world challenge potential improvements in human health from such research. To overcome this challenge, we propose a ‘Safe Harbor Framework for International Ethics Equivalency’ that facilitates the harmonization of ethics review of specific types of data-driven international research projects while respecting globally transposable research ethics norms and principles. The Safe Harbor would consist in part of an agency supporting an International Federation for Ethics Review (IFER), formed by a voluntary compact among countries, granting agencies, philanthropies, institutions, and healthcare, patient advocacy, and research organizations. IFER would be both a central ethics review body, and also a forum for review and follow-up of policies concerning ethics norms for international research projects. It would be built on five principle elements: (1) registration, (2) compliance review, (3) recognition, (4) monitoring and enforcement, and (5) public participation. The Safe Harbor would create many benefits for researchers, countries, and the general public, and may eventually have application beyond (gen)omics to other areas of biomedical research that increasingly engage in secondary use of data and present only negligible risks. PMID:27774154

Understanding the Human Genome Project -- A Fact Sheet

MedlinePlus

... cost of sequencing whole exomes or genomes, groundbreaking comparative genomic studies are now identifiying the causes of ... the role of ethical, legal, and social implications research more important than ever. National Human Genome Research ...

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.

Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues

PubMed Central

2011-01-01

Background As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics. Discussion This paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal

Cultural diversity in nanotechnology ethics.

PubMed

Schummer, Joachim

2011-01-01

Along with the rapid worldwide advance of nanotechnology, debates on associated ethical issues have spread from local to international levels. However unlike science and engineering issues, international perceptions of ethical issues are very diverse. This paper provides an analysis of how sociocultural factors such as language, cultural heritage, economics and politics can affect how people perceive ethical issues of nanotechnology. By attempting to clarify the significance of sociocultural issues in ethical considerations my aim is to support the ongoing international dialogue on nanotechnology. At the same time I pose the general question of ethical relativism in engineering ethics, that is to say whether or not different ethical views are irreconcilable on a fundamental level.

Post-genomics nanotechnology is gaining momentum: nanoproteomics and applications in life sciences.

PubMed

Kobeissy, Firas H; Gulbakan, Basri; Alawieh, Ali; Karam, Pierre; Zhang, Zhiqun; Guingab-Cagmat, Joy D; Mondello, Stefania; Tan, Weihong; Anagli, John; Wang, Kevin

2014-02-01

The post-genomics era has brought about new Omics biotechnologies, such as proteomics and metabolomics, as well as their novel applications to personal genomics and the quantified self. These advances are now also catalyzing other and newer post-genomics innovations, leading to convergences between Omics and nanotechnology. In this work, we systematically contextualize and exemplify an emerging strand of post-genomics life sciences, namely, nanoproteomics and its applications in health and integrative biological systems. Nanotechnology has been utilized as a complementary component to revolutionize proteomics through different kinds of nanotechnology applications, including nanoporous structures, functionalized nanoparticles, quantum dots, and polymeric nanostructures. Those applications, though still in their infancy, have led to several highly sensitive diagnostics and new methods of drug delivery and targeted therapy for clinical use. The present article differs from previous analyses of nanoproteomics in that it offers an in-depth and comparative evaluation of the attendant biotechnology portfolio and their applications as seen through the lens of post-genomics life sciences and biomedicine. These include: (1) immunosensors for inflammatory, pathogenic, and autoimmune markers for infectious and autoimmune diseases, (2) amplified immunoassays for detection of cancer biomarkers, and (3) methods for targeted therapy and automatically adjusted drug delivery such as in experimental stroke and brain injury studies. As nanoproteomics becomes available both to the clinician at the bedside and the citizens who are increasingly interested in access to novel post-genomics diagnostics through initiatives such as the quantified self, we anticipate further breakthroughs in personalized and targeted medicine.

Post-Genomics Nanotechnology Is Gaining Momentum: Nanoproteomics and Applications in Life Sciences

PubMed Central

Kobeissy, Firas H.; Gulbakan, Basri; Alawieh, Ali; Karam, Pierre; Zhang, Zhiqun; Guingab-Cagmat, Joy D.; Mondello, Stefania; Tan, Weihong; Anagli, John

2014-01-01

Abstract The post-genomics era has brought about new Omics biotechnologies, such as proteomics and metabolomics, as well as their novel applications to personal genomics and the quantified self. These advances are now also catalyzing other and newer post-genomics innovations, leading to convergences between Omics and nanotechnology. In this work, we systematically contextualize and exemplify an emerging strand of post-genomics life sciences, namely, nanoproteomics and its applications in health and integrative biological systems. Nanotechnology has been utilized as a complementary component to revolutionize proteomics through different kinds of nanotechnology applications, including nanoporous structures, functionalized nanoparticles, quantum dots, and polymeric nanostructures. Those applications, though still in their infancy, have led to several highly sensitive diagnostics and new methods of drug delivery and targeted therapy for clinical use. The present article differs from previous analyses of nanoproteomics in that it offers an in-depth and comparative evaluation of the attendant biotechnology portfolio and their applications as seen through the lens of post-genomics life sciences and biomedicine. These include: (1) immunosensors for inflammatory, pathogenic, and autoimmune markers for infectious and autoimmune diseases, (2) amplified immunoassays for detection of cancer biomarkers, and (3) methods for targeted therapy and automatically adjusted drug delivery such as in experimental stroke and brain injury studies. As nanoproteomics becomes available both to the clinician at the bedside and the citizens who are increasingly interested in access to novel post-genomics diagnostics through initiatives such as the quantified self, we anticipate further breakthroughs in personalized and targeted medicine. PMID:24410486

Genomic research with human samples. Points of view from scientists and research subjects about disclosure of results and risks of genomic research. Ethical and empirical approach.

PubMed

Valle Mansilla, José Ignacio

2011-01-01

Biomedical researchers often now ask subjects to donate samples to be deposited in biobanks. This is not only of interest to researchers, patients and society as a whole can benefit from the improvements in diagnosis, treatment, and prevention that the advent of genomic medicine portends. However, there is a growing debate regarding the social and ethical implications of creating biobanks and using stored human tissue samples for genomic research. Our aim was to identify factors related to both scientists and patients' preferences regarding the sort of information to convey to subjects about the results of the study and the risks related to genomic research. The method used was a survey addressed to 204 scientists and 279 donors from the U.S. and Spain. In this sample, researchers had already published genomic epidemiology studies; and research subjects had actually volunteered to donate a human sample for genomic research. Concerning the results, patients supported more frequently than scientists their right to know individual results from future genomic research. These differences were statistically significant after adjusting by the opportunity to receive genetic research results from the research they had previously participated and their perception of risks regarding genetic information compared to other clinical data. A slight majority of researchers supported informing participants about individual genomic results only if the reliability and clinical validity of the information had been established. Men were more likely than women to believe that patients should be informed of research results even if these conditions were not met. Also among patients, almost half of them would always prefer to be informed about individual results from future genomic research. The three main factors associated to a higher support of a non-limited access to individual results were: being from the US, having previously been offered individual information and considering

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

ERIC Educational Resources Information Center

Löfström, Erika; Pyhältö, Kirsi

2015-01-01

This study focused on exploring students' and supervisors' perceptions of ethical problems in doctoral supervision in the natural sciences. Fifteen supervisors and doctoral students in one research community in the natural sciences were interviewed about their practices and experiences in the doctoral process and supervision. We explored to what…

Enabling responsible public genomics.

PubMed

Conley, John M; Doerr, Adam K; Vorhaus, Daniel B

2010-01-01

As scientific understandings of genetics advance, researchers require increasingly rich datasets that combine genomic data from large numbers of individuals with medical and other personal information. Linking individuals' genetic data and personal information precludes anonymity and produces medically significant information--a result not contemplated by the established legal and ethical conventions governing human genomic research. To pursue the next generation of human genomic research and commerce in a responsible fashion, scientists, lawyers, and regulators must address substantial new issues, including researchers' duties with respect to clinically significant data, the challenges to privacy presented by genomic data, the boundary between genomic research and commerce, and the practice of medicine. This Article presents a new model for understanding and addressing these new challenges--a "public genomics" premised on the idea that ethically, legally, and socially responsible genomics research requires openness, not privacy, as its organizing principle. Responsible public genomics combines the data contributed by informed and fully consenting information altruists and the research potential of rich datasets in a genomic commons that is freely and globally available. This Article examines the risks and benefits of this public genomics model in the context of an ambitious genetic research project currently under way--the Personal Genome Project. This Article also (i) demonstrates that large-scale genomic projects are desirable, (ii) evaluates the risks and challenges presented by public genomics research, and (iii) determines that the current legal and regulatory regimes restrict beneficial and responsible scientific inquiry while failing to adequately protect participants. The Article concludes by proposing a modified normative and legal framework that embraces and enables a future of responsible public genomics.

The Teaching of Ethics. Vol. 1-9.

ERIC Educational Resources Information Center

1980

The state of ethics teaching at the undergraduate and professional school levels is examined in these comprehensive monographs sponsored by the Institute of Society, Ethics and the Life Sciences/The Hastings Center. "The Teaching of Ethics in Higher Education (I)" encompasses: (1) the number and extent of courses in ethics, (2) the status and…

The "Ethics Committee": A Practical Approach to Introducing Bioethics and Ethical Thinking

ERIC Educational Resources Information Center

Goodwin, Mark; Kramer, Cas; Cashmore, Annette

2012-01-01

Bioethics is an increasingly important part of the biosciences curriculum at school and in higher education, but few science teachers have much experience of teaching the subject in an engaging or interactive manner. This article sets out a session that allows students to practise the skills of ethical thinking and ethical debate in a relevant…

The ethical dimensions of wildlife disease management in an evolutionary context

PubMed Central

Crozier, GKD; Schulte-Hostedde, Albrecht I

2014-01-01

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

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

PubMed

Crozier, Gkd; Schulte-Hostedde, Albrecht I

2014-08-01

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

Science ethics education: effects of a short lecture on plagiarism on the knowledge of young medical researchers.

PubMed

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

2012-01-01

Plagiarism is the most common form of scientific fraud. It is agreed that the best preventive measure is education of young scientists on basic principles of responsible conduct of research and writing. The purpose of this article was to contribute to the students' knowledge and adoption of the rules of scientific writing. A 45 min lecture was delivered to 98 attendees during 3 courses on science ethics. Before and after the course the attendees fulfilled an especially designed questionnaire with 13 questions, specifically related to the definition and various types of plagiarism and self-plagiarism. Although considering themselves as insufficiently educated in science ethics, the majority of the attendees responded correctly to almost all questions even before the course, with percentages of correct responses to the specific question varying from 45.9-85.7%. After completion of the course, these percentages were significantly (p<0.01) higher, ranging from 66.3-98.8%. The percentage of improvement of the knowledge about plagiarism ranged from 9.18- 42.86%. The percentage of impairment ranged from 1.02- 16.33%, the latter being related to the question on correct citing unpublished materials of other people; only for this question the percentage of impairment (16.33%) was greater than the percentage of improvement (11.22%). Even a short lecture focused on plagiarism contributed to the students' awareness that there are many forms of plagiarism, and that plagiarism is a serious violation of science ethics. This result confirms the largely accepted opinion that education is the best means in preventing plagiarism.

Institutional initiatives in professional scientific ethics: three case studies

NASA Astrophysics Data System (ADS)

Nickless, Edmund; Bilham, Nic

2015-04-01

Learned and professional scientific bodies can play a vital role in promoting ethical behaviours, giving practical substance to theoretical consideration of geoethical principles and complementing the efforts of individual scientists and practitioners to behave in a professional and ethical manner. Institutions may do this through mandatory professional codes of conduct, by developing guidelines and initiatives to codify and stimulate the uptake of best practice, and through wider initiatives to engender a culture conducive to such behaviours. This presentation will outline three current institutional initiatives which directly or indirectly address scientific ethics: i. The UK Science Council's Declaration on Diversity, Equality and Inclusion. ii. Development and promulgation of the American Geosciences Institute's (AGI) Guidelines for Ethical Professional Conduct. iii. The American Geophysical Union's (AGU) Scientific Code of Conduct and Professional Ethics. The focus of the Science Council and its member bodies (including the Geological Society of London) on diversity is of central importance when considering ethical behaviours in science. First, improving equality and diversity in the science workforce is at the heart of ethical practice, as well as being essential to meeting current and future skills needs. Second, in addition to demographic diversity (whether in terms of gender, race, economic status, sexuality or gender identity, etc), an important dimension of diversity in science is to allow space for a plurality of scientific views, and to nurture dissenting voices - essential both to the development of scientific knowledge and to its effective communication to non-technical audiences.

Ethical Issues Surrounding Personalized Medicine: A Literature Review.

PubMed

Salari, Pooneh; Larijani, Bagher

2017-03-01

More than a decade ago, personalized medicine was presented in modern medicine. Personalized medicine means that the right drug should be prescribed for the right patient based on genetic data. No doubt is developing medical sciences, and its shift into personalized medicine complicates ethical challenges more than before. In this review, we categorized all probable ethical considerations of personalized medicine in research and development and service provision. Based on our review, extensive changes in healthcare system including ethical changes are needed to overcome the ethical obstacles including knowledge gap and informed consent, privacy and confidentiality and availability of healthcare services. Furthermore social benefit versus science development and individual benefit should be balanced. Therefore guidelines and regulations should be compiled to represent the ethical framework; also ethical decision making should be day-to-day and individualized.

Ethics and the ethnography of medical research in Africa

PubMed Central

Molyneux, Sassy; Geissler, P. Wenzel

2008-01-01

The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more ‘situated ethics’ of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in ‘doing ethics’ in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting

Ethical living: relinking ethics and consumption through care in Chile and Brazil.

PubMed

Ariztia, Tomas; Agloni, Nurjk; Pellandini-Simányi, Léna

2018-06-01

Mainstream conceptualizations of 'ethical consumption' equate the notion with conscious, individual, market-mediated choices motivated by ethical or political aims that transcend ordinary concerns. Drawing on recent sociology and anthropology of consumption literature on the links between ordinary ethics and ethical consumption, this article discusses some of the limitations of this conceptualization. Using data from 32 focus groups conducted in Chile and Brazil, we propose a conceptualization of ethical consumption that does not centre on individual, market-mediated choices but understands it at the level of practical outcomes, which we refer to as different forms of 'ethical living'. To do that, we argue, we need to depart from the deontological understanding of ethics that underpins mainstream approaches to ethical consumption and adopt a more consequentialist view focusing on ethical outcomes. We develop these points through describing one particular ordinary moral regime that seemed to be predominant in participants' accounts of ethics and consumption in both Chile and Brazil: one that links consumption and ethics through care. We show that the moral regime of care leads to 'ethical outcomes', such as energy saving or limiting overconsumption, yet contrary to the mainstream view of ethical consumption emphasizing politicized choice expressed through markets, these result from following ordinary ethics, often through routines of practices. © London School of Economics and Political Science 2017.

Population Sciences, Translational Research and the Opportunities and Challenges for Genomics to Reduce the Burden of Cancer in the 21st Century

PubMed Central

Khoury, Muin J.; Clauser, Steven B.; Freedman, Andrew N.; Gillanders, Elizabeth M.; Glasgow, Russ E.; Klein, William M. P.; Schully, Sheri D.

2011-01-01

Advances in genomics and related fields are promising tools for risk assessment, early detection, and targeted therapies across the entire cancer care continuum. In this commentary, we submit that this promise cannot be fulfilled without an enhanced translational genomics research agenda firmly rooted in the population sciences. Population sciences include multiple disciplines that are needed throughout the translational research continuum. For example, epidemiologic studies are needed not only to accelerate genomic discoveries and new biological insights into cancer etiology and pathogenesis, but to characterize and critically evaluate these discoveries in well defined populations for their potential for cancer prediction, prevention and response to treatments. Behavioral, social and communication sciences are needed to explore genomic-modulated responses to old and new behavioral interventions, adherence to therapies, decision-making across the continuum, and effective use in health care. Implementation science, health services, outcomes research, comparative effectiveness research and regulatory science are needed for moving validated genomic applications into practice and for measuring their effectiveness, cost effectiveness and unintended consequences. Knowledge synthesis, evidence reviews and economic modeling of the effects of promising genomic applications will facilitate policy decisions, and evidence-based recommendations. Several independent and multidisciplinary panels have recently made specific recommendations for enhanced research and policy infrastructure to inform clinical and population research for moving genomic innovations into the cancer care continuum. An enhanced translational genomics and population sciences agenda is urgently needed to fulfill the promise of genomics in reducing the burden of cancer. PMID:21795499

Professional ethics in nursing: an integrative review.

PubMed

Kangasniemi, Mari; Pakkanen, Piiku; Korhonen, Anne

2015-08-01

To conduct an integrative review and synthesize current primary studies of professional ethics in nursing. Professional ethics is a familiar concept in nursing and provides an ethical code for nursing practice. However, little is known about how professional ethics has been defined and studied in nursing science. Systematic literature searches from 1948-February 2013, using the CINAHL, PubMed and Scopus electronic databases to look at previously published peer-reviewed studies. A modified version of Cooper's five-stage integrative review was used to review and synthesize current knowledge. Fourteen papers were included in this research. According to our synthesis, professional ethics is described as an intra-professional approach to care ethics and professionals commit to it voluntarily. Professional ethics consist of values, duties, rights and responsibilities, regulated by national legislation and international agreements and detailed in professional codes. Professional ethics is well established in nursing, but is constantly changing due to internal and external factors affecting the profession. Despite the obvious importance of professional ethics, it has not been studied much in nursing science. Greater knowledge of professional ethics is needed to understand and support nurses' moral decision-making and to respond to the challenges of current changes in health care and society. © 2015 John Wiley & Sons Ltd.

Ethics of Information Supply.

ERIC Educational Resources Information Center

Oppenheim, Charles

This discussion of the ethics of the information process provides a brief review of the process of information supply and flow, primarily in science and technology; looks at various points in the flow of information; and highlights particular ethical concerns. Facets of the process discussed in more detail include ways in which some scientists…

Developing Communities of Enquiry: Dealing with Social and Ethical Issues in Science at Key Stage 3

ERIC Educational Resources Information Center

Dunlop, Lynda; Humes, Gill; Clarke, Linda; Martin, Valerie McKelvey

2011-01-01

Reproductive technologies, drug discovery and exploration of the universe are areas of contemporary research that raise issues for individuals and society. Forward Thinking, Northern Ireland uses the development of communities of enquiry to promote discussion of these and other social and ethical issues in science with students aged 11-14 years.…

Computer ethics: A capstone course

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

Fisher, T.G.; Abunawass, A.M.

1994-12-31

This paper presents a capstone course on computer ethics required for all computer science majors in our program. The course was designed to encourage students to evaluate their own personal value systems in terms of the established values in computer science as represented by the ACM Code of Ethics. The structure, activities, and topics of the course as well as assessment of the students are presented. Observations on various course components and student evaluations of the course are also presented.

Ethics in Publishing: Complexity Science and Human Factors Offer Insights to Develop a Just Culture.

PubMed

Saurin, Tarcisio Abreu

2016-12-01

While ethics in publishing has been increasingly debated, there seems to be a lack of a theoretical framework for making sense of existing rules of behavior as well as for designing, managing and enforcing such rules. This letter argues that systems-oriented disciplines, such as complexity science and human factors, offer insights into new ways of dealing with ethics in publishing. Some examples of insights are presented. Also, a call is made for empirical studies that unveil the context and details of both retracted papers and the process of writing and publishing academic papers. This is expected to shed light on the complexity of the publication system as well as to support the development of a just culture, in which all participants are accountable.

Beliefs, Values, Ethics and Moral Reasoning in Socio-Scientific Education

ERIC Educational Resources Information Center

Yap, Siew Fong

2014-01-01

The realisation to integrate science, ethics and morality is recognised with growing impetus in recent years (as noted with introducing the Australian Curriculum "Science as a Human Endeavour" strand), to develop sophisticated epistemologies of science, which includes an appreciation of the social context including ethical thinking. To…

[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.

Ethical and legal implications of whole genome and whole exome sequencing in African populations.

PubMed

Wright, Galen E B; Koornhof, Pieter G J; Adeyemo, Adebowale A; Tiffin, Nicki

2013-05-28

Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for biomedical research. Funding agencies and journals often require submission of genomic data from research participants to databases that allow open or controlled data access for all investigators. Access to such genotype-phenotype and pedigree data, however, needs careful control in order to prevent identification of individuals or families. This is particularly the case in Africa, where many researchers and their patients are inexperienced in the ethical issues accompanying whole genome and exome research; and where an historical unidirectional flow of samples and data out of Africa has created a sense of exploitation and distrust. In the current study, we analysed the implications of the anticipated surge of next generation sequencing data in Africa and the subsequent data sharing concepts on the protection of privacy of research subjects. We performed a retrospective analysis of the informed consent process for the continent and the rest-of-the-world and examined relevant legislation, both current and proposed. We investigated the following issues: (i) informed consent, including guidelines for performing culturally-sensitive next generation sequencing research in Africa and availability of suitable informed consent documents; (ii) data security and subject privacy whilst practicing data sharing; (iii) conveying the implications of such concepts to research participants in resource limited settings. We

Ethical and legal implications of whole genome and whole exome sequencing in African populations

PubMed Central

2013-01-01

Background Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for biomedical research. Discussion Funding agencies and journals often require submission of genomic data from research participants to databases that allow open or controlled data access for all investigators. Access to such genotype-phenotype and pedigree data, however, needs careful control in order to prevent identification of individuals or families. This is particularly the case in Africa, where many researchers and their patients are inexperienced in the ethical issues accompanying whole genome and exome research; and where an historical unidirectional flow of samples and data out of Africa has created a sense of exploitation and distrust. In the current study, we analysed the implications of the anticipated surge of next generation sequencing data in Africa and the subsequent data sharing concepts on the protection of privacy of research subjects. We performed a retrospective analysis of the informed consent process for the continent and the rest-of-the-world and examined relevant legislation, both current and proposed. We investigated the following issues: (i) informed consent, including guidelines for performing culturally-sensitive next generation sequencing research in Africa and availability of suitable informed consent documents; (ii) data security and subject privacy whilst practicing data sharing; (iii) conveying the implications of such concepts to research participants in resource

Troubling STEM: Making a Case for an Ethics/STEM Partnership

NASA Astrophysics Data System (ADS)

Steele, Astrid

2016-06-01

Set against the backdrop of a STEM-based (science, technology, engineering and mathematics) activity in a teacher education science methods class, the author examines the need for ethics education to be partnered with STEM education. To make the case, the origin of the STEM initiative, undertaken and strongly supported by both US government and corporate sources, is briefly recounted. The STSE initiative (science, technology, society and environment) is posited as a counterpoint to STEM. Also considered are: (a) an historical perspective of science and technology as these impact difficult individual and social decision making; (b) STEM knowledge generation considered through the lens of Habermas' threefold knowledge typology; and (c) the experiences of the teacher candidates working through the STEM activity when an ethical challenge is posed. The author demonstrates the need for a moral component for science education and makes the case for a partnership between STEM and ethics education. Further, such a partnership has been shown to increase student enjoyment and motivation for their science studies. Three possible ethical frameworks are examined for their theoretical and practical utility in a science classroom.

An investigation of students' perceptions of ethical practice: engaging a reflective dialogue about ethics education in the health professions.

PubMed

Kinsella, Elizabeth Anne; Phelan, Shanon K; Park Lala, Anna; Mom, Vanna

2015-08-01

The ethical climate in which occupational therapists, and other health practitioners, currently practice is increasingly complex. There have been a number of calls for greater attention to ethics education within health science curricula. This study investigated occupational therapy students' perceptions of the meaning of ethical practice as a means of engaging in a dialogue about the aims of ethics education in contemporary health science contexts. A phenomenological methodological approach was adopted for the study. Interviews were conducted over 2 years with 25 student participants. The data were analyzed using phenomenological methods of analysis. Seven themes depict students' views about the meaning of ethical practice and include: being faithful to the tenets of your practice, being communicative, being in tune with your values, understanding the client's needs, weighing the pros and cons, negotiating the grey zones, and taking time to reflect. The findings contribute to understanding students' conceptions of the meaning of ethical practice that include and move beyond traditional codes, principles, and professional standards to encompass a range of dimensions of ethical practice. These additional dimensions raise insights of relevance to those who design and facilitate ethics education with health professionals.

An Investigation of Students' Perceptions of Ethical Practice: Engaging a Reflective Dialogue about Ethics Education in the Health Professions

ERIC Educational Resources Information Center

Kinsella, Elizabeth Anne; Phelan, Shanon K.; Lala, Anna Park; Mom, Vanna

2015-01-01

The ethical climate in which occupational therapists, and other health practitioners, currently practice is increasingly complex. There have been a number of calls for greater attention to ethics education within health science curricula. This study investigated occupational therapy students' perceptions of the meaning of ethical practice as a…

Practical Guidance on Science and Engineering Ethics Education for Instructors and Administrators: Papers and Summary from a Workshop, December 12, 2012

ERIC Educational Resources Information Center

Benya, Frazier F., Ed.; Fletcher, Cameron H.,Ed.; Hollander, Rachelle D.,Ed.

2013-01-01

Over the last two decades, colleges and universities in the United States have significantly increased the formal ethics instruction they provide in science and engineering. Today, science and engineering programs socialize students into the values of scientists and engineers as well as their obligations in the conduct of scientific research and…

'Mind genomics': the experimental, inductive science of the ordinary, and its application to aspects of food and feeding.

PubMed

Moskowitz, Howard R

2012-11-05

The paper introduces the empirical science of 'mind genomics', whose objective is to understand the dimensions of ordinary, everyday experience, identify mind-set segments of people who value different aspects of that everyday experience, and then assign a new person to a mind-set by a statistically appropriate procedure. By studying different experiences using experimental design of ideas, 'mind genomics' constructs an empirical, inductive science of perception and experience, layer by layer. The ultimate objective of 'mind genomics' is a large-scale science of experience created using induction, with the science based upon emergent commonalities across many different types of daily experience. The particular topic investigated in the paper is the experience of healthful snacks, what makes a person 'want' them, and the dollar value of different sensory aspects of the healthful snack. Copyright © 2012 Elsevier Inc. All rights reserved.

Human Genome Program

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

Not Available

1993-01-01

The DOE Human Genome program has grown tremendously, as shown by the marked increase in the number of genome-funded projects since the last workshop held in 1991. The abstracts in this book describe the genome research of DOE-funded grantees and contractors and invited guests, and all projects are represented at the workshop by posters. The 3-day meeting includes plenary sessions on ethical, legal, and social issues pertaining to the availability of genetic data; sequencing techniques, informatics support; and chromosome and cDNA mapping and sequencing.

Empirical ethics, context-sensitivity, and contextualism.

PubMed

Musschenga, Albert W

2005-10-01

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

Research 2.0: social networking and direct-to-consumer (DTC) genomics.

PubMed

Lee, Sandra Soo-Jin; Crawley, LaVera

2009-01-01

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information--openly sharing of data with all interested parties, not just the biomedical researcher--for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis.

Ethical Implications of Seismic Risk Communication in Istanbul - Insights from a Transdisciplinary, Film-based Science Communication Workshop

NASA Astrophysics Data System (ADS)

Ickert, Johanna; Stewart, Iain S.

2016-04-01

For more than a decade, social science studies indicate that there is little or no correlation between the provision of scientific information about geohazards and risks and the adaptive changes in individual or community behaviour that would reduce risk. Bridging that gap to effectively convey hazard science 'the last mile' to those communities at risk raises a number of ethical issues about the role and responsibilities of geoscientists as communicators. Those issues emerge from a methodological shift away from the dominant interpretation of seismic risk communication as a transfer of scientific facts to "the public", towards more inclusive transdisciplinary communication strategies that incorporate peer-role models, adopt social network-based strategies and directly engage with communities in motivating preparedness actions. With this methodological shift comes ethical dilemmas. What are the target-groups that should be prioritised? What are the professional expectations and levels of personal engagement required of geo-communicators? How able and willing are geoscientists to include other forms of knowledge (e.g. from local communities or other disciplines)? What media formats can reconcile argumentative, informational "matters of fact" with sociocultural and psychological "matters of concern"? How should scientists react to political controversies related to risk mitigation and its communication? In the context of these ethical concerns, many geoscientist struggle to switch from conventional communication modes in which they are the technical 'experts' to more community-centered, participatory modes of public engagement. We examine this research question through a case study on seismic risk communication challenges in Istanbul, a megacity with one of the highest seismic vulnerabilities in the world. Currently, there are few formal mechanisms to facilitate interchange between academic geoscientists and the general public in Istanbul. In order to reduce the city

Research Ethics with Undergraduates in Summer Research Training Programs

NASA Astrophysics Data System (ADS)

Cheung, I.; Yalcin, K.

2016-02-01

Many undergraduate research training programs incorporate research ethics into their programs and some are required. Engaging students in conversations around challenging topics such as conflict of interest, cultural and gender biases, what is science and what is normative science can difficult in newly formed student cohorts. In addition, discussing topics with more distant impacts such as science and policy, intellectual property and authorship, can be difficult for students in their first research experience that have more immediate concerns about plagiarism, data manipulation, and the student/faculty relationship. Oregon State University's Research Experience for Undergraduates (REU) in Ocean Sciences: From Estuaries to the Deep Sea as one model for incorporating a research ethics component into summer undergraduate research training programs. Weaved into the 10-week REU program, undergraduate interns participate in a series of conversations and a faculty mentor panel focused on research ethics. Topics discussed are in a framework for sharing myths, knowledge and personal experiences on issues in research with ethical implications. The series follows guidelines and case studies outlined from the text, On Being A Scientist: Responsible Conduct In Research Committee on Science, Engineering, and Public Policy, National Academy of Sciences.

Environmental Ethics Awareness of Teachers

ERIC Educational Resources Information Center

Karakaya, Ferhat; Yilmaz, Mehmet

2017-01-01

The purpose of the present research is to determine science teachers' and biology teachers' awareness levels of environmental ethics in relation to different variables. The "Environmental Ethics Awareness Scale" developed by Özer and Keles (2016) was used in the research. The research is consisted of 237 people, including 130 science…

Ethics Teaching in Higher Education for Principled Reasoning: A Gateway for Reconciling Scientific Practice with Ethical Deliberation.

PubMed

Aközer, Mehmet; Aközer, Emel

2017-06-01

This paper proposes laying the groundwork for principled moral reasoning as a seminal goal of ethics interventions in higher education, and on this basis, makes a case for educating future specialists and professionals with a foundation in philosophical ethics. Identification of such a seminal goal is warranted by (1) the progressive dissociation of scientific practice and ethical deliberation since the onset of a problematic relationship between science and ethics around the mid-19th century, and (2) the extensive mistrust of integrating ethics in science and engineering curricula beyond its "applied," "practical," or "professional" implications. Although calls by international scientific and educational bodies to strengthen ethics teaching in scientific education over the past quarter century have brought about a notion of combining competence in a certain field with competence in ethics, this is neither entrenched in the academic community, nor fleshed out as regards its core or instruments to realize it. The legitimate goals of ethics teaching in higher education, almost settled since the 1980s, can be subsumed under the proposed seminal goal, and the latter also would safeguard content and methods of ethics interventions against the intrusion of indoctrinative approaches. In this paper, derivation of the proposed seminal goal rests on an interpretation of the Kohlbergian cognitive-developmental conception of moral adulthood consisting in autonomous principled moral reasoning. This interpretation involves, based on Kant's conception of the virtuous person, integrating questions about the "good life" into the domain of principled reasoning.

Science, ethics and war: a pacifist's perspective.

PubMed

Kovac, Jeffrey

2013-06-01

This article considers the ethical aspects of the question: should a scientist engage in war-related research, particularly use-inspired or applied research directed at the development of the means for the better waging of war? Because scientists are simultaneously professionals, citizens of a particular country, and human beings, they are subject to conflicting moral and practical demands. There are three major philosophical views concerning the morality of war that are relevant to this discussion: realism, just war theory and pacifism. In addition, the requirements of professional codes of ethics and common morality contribute to an ethical analysis of the involvement of scientists and engineers in war-related research and technology. Because modern total warfare, which is facilitated by the work of scientists and engineers, results in the inevitable killing of innocents, it follows that most, if not all, war-related research should be considered at least as morally suspect and probably as morally prohibited.

Mapping the human genome

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

Annas, G.C.; Elias, S.

1992-01-01

This article is a review of the book Mapping the Human Genome: Using Law and Ethics as Guides, edited by George C. Annas and Sherman Elias. The book is a collection of essays on the subject of using ethics and laws as guides to justify human gene mapping. It addresses specific issues such problems related to eugenics, patents, insurance as well as broad issues such as the societal definitions of normality.

Some methodological aspects of ethics committees' expertise: the Ukrainian example.

PubMed

Pustovit, Svitlana V

2006-01-01

Today local, national and international ethics committees have become an effective means of social regulation in many European countries. Science itself is an important precondition for the development of bioethical knowledge and ethics expertise. Cultural, social, historical and religious preconditions can facilitate different forms and methods of ethics expertise in each country. Ukrainian ethics expertise has some methodological problems connected with its socio-cultural, historical, science and philosophy development particularities. In this context, clarification of some common legitimacies or methodological approaches to ethics committee (EC) phenomena such as globalization, scientization and the prioritization of an ethics paradigm are very important. On the other hand, elaborate study and critical analysis of international experience by Ukraine and other Eastern European countries will provide the integration of their local and national ethics expertises into a world bioethics ethos.

Rewind, review, reflect and fast forward: from Ethics to GeoEthics.

NASA Astrophysics Data System (ADS)

Marone, Eduardo

2017-04-01

Philosophy has as many definitions as philosophers but, at the end of the day, it is no more and no less than the science of thinking using the reason. It gives us tools for rationalizing, following logical paths and with a critical eye, to understand the material and immaterial substance of the universe. It has many branches, and a couple of them, Ethics and Epistemology, are central for the evolution of the human knowledge, among many others. Today, at the XXI Century, it seems that the lack of formal and adequate education on such important matters is making the act of "thinking" not so important when compared with the accumulation of "information", right or wrong, pasteurized or in disconnected pieces, with no much room/time for critical and logical analysis (Philosophy). If the tools to build the knowledge (Epistemology) are not usually familiar to the scientists and, worst, the need of taking the right actions with the generated new and existing knowledge (Ethics) is not a priority; the outputs cannot be the best ones. There have been several academic works and meetings looking into the causes of the scholarly illiteracy on Ethics and Epistemology in Earth Sciences. Among them, our sessions at EGU have endured showing important aspects that need to be tackled and, particularly, insisting in the fact that it is a continuous effort. However, we still need to go back (Rewind) to the main principles of Philosophy, Epistemology and Ethics, looking at them with care (Review), and think (Reflecting) returning to the present (Fast Forward) to make the world better for future generations. Geoethics consists of research and reflection on the values that underpin appropriate behaviours and practices, wherever human activities interact with the Earth system. Although more general ethical issues, which affect other/all sciences practices and behaviours, are included among the Geoethic concerns (as plagiarism, harassment, gender equity, etc.), the focus remains at the

DNA Data Bank of Japan (DDBJ) for genome scale research in life science

PubMed Central

Tateno, Y.; Imanishi, T.; Miyazaki, S.; Fukami-Kobayashi, K.; Saitou, N.; Sugawara, H.; Gojobori, T.

2002-01-01

The DNA Data Bank of Japan (DDBJ, http://www.ddbj.nig.ac.jp) has made an effort to collect as much data as possible mainly from Japanese researchers. The increase rates of the data we collected, annotated and released to the public in the past year are 43% for the number of entries and 52% for the number of bases. The increase rates are accelerated even after the human genome was sequenced, because sequencing technology has been remarkably advanced and simplified, and research in life science has been shifted from the gene scale to the genome scale. In addition, we have developed the Genome Information Broker (GIB, http://gib.genes.nig.ac.jp) that now includes more than 50 complete microbial genome and Arabidopsis genome data. We have also developed a database of the human genome, the Human Genomics Studio (HGS, http://studio.nig.ac.jp). HGS provides one with a set of sequences being as continuous as possible in any one of the 24 chromosomes. Both GIB and HGS have been updated incorporating newly available data and retrieval tools. PMID:11752245

Conversing on Ethics, Morality and Education

ERIC Educational Resources Information Center

McGavin, P. A.

2013-01-01

In philosophical use, "ethics" and "moral philosophy" are more closely synonymous--one deriving from Greek, "ethike" and the other from Latin "moralis." In typical social science paradigms, there generally prevails a consensual sense of contemporary everyday use of "ethics," except where earlier…

Ethical and social implications of genetic testing for communication disorders.

PubMed

Arnos, Kathleen S

2008-01-01

Advances in genetics and genomics have quickly led to clinical applications to human health which have far-reaching consequences at the individual and societal levels. These new technologies have allowed a better understanding of the genetic factors involved in a wide range of disorders. During the past decade, incredible progress has been made in the identification of genes involved in the normal process of hearing. The resulting clinical applications have presented consumers with new information and choices. Many of the same gene identification techniques are increasingly being applied to the investigation of complex disorders of speech and language. In parallel with gene identification, studies of the legal, ethical and psychosocial impacts of the clinical application of these advances and their influence on specific behaviors of individuals with communication disorders are paramount, but often lag behind. These studies will help to ensure that new technologies are introduced into clinical practice in a responsible manner. As a result of this activity, the participant will be able to (1) explain the differences between Mendelian and complex forms of inheritance and why these differences complicate the ethical impact of genetic testing, (2) explain how publicly funded genome research through the Human Genome Project, the International HapMap Project and others have examined the ethical, legal and social implications of genome research, (3) list some of the ethical complexities of prenatal, newborn and predictive testing for various genetic disorders and (4) discuss the importance of evidence-based practice to the development of public policy for the introduction and clinical use of genetic tests.

Ethical and social implications of genetic testing for communication disorders

PubMed Central

Arnos, Kathleen S.

2013-01-01

Advances in genetics and genomics have quickly led to clinical applications to human health which have far-reaching consequences at the individual and societal levels. These new technologies have allowed a better understanding of the genetic factors involved in a wide range of disorders. During the past decade, incredible progress has been made in the identification of genes involved in the normal process of hearing. The resulting clinical applications have presented consumers with new information and choices. Many of the same gene identification techniques are increasingly being applied to the investigation of complex disorders of speech and language. In parallel with gene identification, studies of the legal, ethical and psychosocial impacts of the clinical application of these advances and their influence on specific behaviors of individuals with communication disorders are paramount, but often lag behind. These studies will help to ensure that new technologies are introduced into clinical practice in a responsible manner. Learning outcomes As a result of this activity, the participant will be able to (1) explain the differences between Mendelian and complex forms of inheritance and why these differences complicate the ethical impact of genetic testing, (2) explain how publicly funded genome research through the Human Genome Project, the International HapMap Project and others have examined the ethical, legal and social implications of genome research, (3) list some of the ethical complexities of prenatal, newborn and predictive testing for various genetic disorders and (4) discuss the importance of evidence-based practice to the development of public policy for the introduction and clinical use of genetic tests. PMID:18452941

The opportunities and ethics of big data: practical priorities for a national Council of Data Ethics.

PubMed

Varley-Winter, Olivia; Shah, Hetan

2016-12-28

In order to generate the gains that can come from analysing and linking big datasets, data holders need to consider the ethical frameworks, principles and applications that help to maintain public trust. In the USA, the National Science Foundation helped to set up a Council for Big Data, Ethics and Society, of which there is no equivalent in the UK. In November 2015, the Royal Statistical Society convened a workshop of 28 participants from government, academia and the private sector, and discussed the practical priorities that might be assisted by a new Council of Data Ethics in the UK. This article draws together the views from that meeting. Priorities for policy-makers and others include seeking a public mandate and informing the terms of the social contract for use of data; building professional competence and due diligence on data protection; appointment of champions who are competent to address public concerns; and transparency, across all dimensions. For government data, further priorities include improvements to data access, and development of data infrastructure. In conclusion, we support the establishment of a national Data Ethics Council, alongside wider and deeper engagement of the public to address data ethics dilemmas.This article is part of the themed issue 'The ethical impact of data science'. © 2016 The Author(s).

Council for International Organizations of Medical Sciences (CIOMS) Ethical Guidelines: advancements and unsolved topics in 2016 upgrade.

PubMed

Borgeat Meza, Marjorie; Luengo-Charath, Ximena; Arancibia, Marcelo; Madrid, Eva

2018-04-25

In 2016, the new edition of the Council for International Organizations of Medical Sciences (CIOMS) Ethical Guidelines was released, which are universally acknowledged as ethical standards in biomedical research. In this article, we critically analyze the improvements and shortcomings of the CIOMS Ethical Guidelines 2016. Among the improvements are the relevance assigned to the social value of research and its effects on decision-making and the creation of public policies; the research development in low-resources scenarios; the communities’ involvement in the research process; the determination of participants’ vulnerability and changes on informed consent related proceedings. Despite the improved harmonization with scientific, technologic and social changes, and that the guidelines provide a tool for researchers and members of research ethics committees alike, some topics remain unsolved, namely the management of participants’ minimal risk and conflicts of interest involved in research, and the development of research in low-incomes scenarios. Nonetheless, we recognize that these new guidelines constitute a progress regarding the context and needs of populations in which research will be conducted, with greater community involvement in the different phases of the investigation project, thus allowing them to access the potential benefits. The impact of the CIOMS Ethical Guidelines 2016, should be appraised over time, particularly in socio-sanitary inequities scenarios and in the context of commercial interests of industry on biomedical research.

The Dürrenmatt's ``Physicists'' as a Tool in Understanding the Ethics of Science

NASA Astrophysics Data System (ADS)

Kapor, Darko

2007-04-01

Part of the course of the History of Physics taught by the author is dedicated to the ethics of science, in particular to moral responsibility of the scientist towards society. In order to make the subject more interesting to the students, the first step is reading the play ``Physicists'' by Friedrich Dürrenmatt (1962). The students are then asked to relate some of the events connected to the nuclear studies before and during the World War II and armaments race with some situations in the play or the author's theses related to it.

From Utopia to Science: Challenges of Personalised Genomics Information for Health Management and Health Enhancement

PubMed Central

2009-01-01

From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at least since the days of Plato’s Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. PMID:20234832

The Evolution of Science in a Latin-American Country: Genetics and Genomics in Brazil.

PubMed

Salzano, Francisco M

2018-03-01

This article begins with a brief overview of the history of Brazil and that of Brazilian science, from the European discovery of the country in 1500 up to the early 21st century. The history of the fields of genetics and genomics, from the 1930s, is then first examined from the focal point of the lives and publications of the three persons who are generally considered to be the founders of genetics in Brazil (C. A. Krug, F. G. Brieger, and A. Dreyfus), and then by 12 other researchers up to 1999. The area of molecular genetics and genomics from 2000 to present is then described. Despite the problems of underdevelopment and the periodical political and economic crises that have affected life in Brazil, the fields of genetics and genomics in Brazil can be regarded as having developed at an appropriate pace, and have contributed in several major ways to world science. Copyright © 2018 by the Genetics Society of America.

Teaching Ethics in Junior High

ERIC Educational Resources Information Center

Norquist, Kathy

2005-01-01

Although the family has traditionally been the place for children to learn values, respect, and ethics, today family and consumer sciences (FACS) educators are required to deliver these types of lessons every day. The author of this brief article promotes the teaching of ethics in junior high school, believing that the emotional and physical…

Ethical challenges in nursing homes--staff's opinions and experiences with systematic ethics meetings with participation of residents' relatives.

PubMed

Bollig, Georg; Schmidt, Gerda; Rosland, Jan Henrik; Heller, Andreas

2015-12-01

Many ethical problems exist in nursing homes. These include, for example, decision-making in end-of-life care, use of restraints and a lack of resources. The aim of the present study was to investigate nursing home staffs' opinions and experiences with ethical challenges and to find out which types of ethical challenges and dilemmas occur and are being discussed in nursing homes. The study used a two-tiered approach, using a questionnaire on ethical challenges and systematic ethics work, given to all employees of a Norwegian nursing home including nonmedical personnel, and a registration of systematic ethics discussions from an Austrian model of good clinical practice. Ninety-one per cent of the nursing home staff described ethical problems as a burden. Ninety per cent experienced ethical problems in their daily work. The top three ethical challenges reported by the nursing home staff were as follows: lack of resources (79%), end-of-life issues (39%) and coercion (33%). To improve systematic ethics work, most employees suggested ethics education (86%) and time for ethics discussion (82%). Of 33 documented ethics meetings from Austria during a 1-year period, 29 were prospective resident ethics meetings where decisions for a resident had to be made. Agreement about a solution was reached in all 29 cases, and this consensus was put into practice in all cases. Residents did not participate in the meetings, while relatives participated in a majority of case discussions. In many cases, the main topic was end-of-life care and life-prolonging treatment. Lack of resources, end-of-life issues and coercion were ethical challenges most often reported by nursing home staff. The staff would appreciate systematic ethics work to aid decision-making. Resident ethics meetings can help to reach consensus in decision-making for nursing home patients. In the future, residents' participation should be encouraged whenever possible. © 2015 The Authors. Scandinavian Journal of Caring

Integrating the dimensions of sex and gender into basic life sciences research: methodologic and ethical issues.

PubMed

Holdcroft, Anita

2007-01-01

The research process -- from study design and selecting a species and its husbandry, through the experiment, analysis, peer review, and publication -- is rarely subject to questions about sex or gender differences in mainstream life sciences research. However, the impact of sex and gender on these processes is important in explaining biological variations and presentation of symptoms and diseases. This review aims to challenge assumptions and to develop opportunities to mainstream sex and gender in basic scientific research. Questions about the mechanisms of sex and gender effects were reviewed in relation to biological, environmental, social, and psychological interactions. Gender variations, in respect to aging, socializing, and reproduction, that are present in human populations but are rarely featured in laboratory research were considered to more effectively translate animal research into clinical health care. Methodologic approaches to address the present lack of a gender dimension in research include actively reducing variations through attention to physical factors, biological rhythms, and experimental design. In addition, through genomic and acute nongenomic activity, hormones may compound effects through multiple small sex differences that occur during the course of an acute pathologic event. Furthermore, the many exogenous sex steroid hormones and their congeners used in medicine (eg, in contraception and cancer therapies) may add to these effects. The studies reviewed provide evidence that sex and gender are determinants of many outcomes in life science research. To embed the gender dimension into basic scientific research, a broad approach -- gender mainstreaming -- is warranted. One example is the use of review boards (eg, animal ethical review boards and journal peer-review boards) in which gender-related standardized questions can be asked about study design and analysis. A more fundamental approach is to question the relevance of present

Using Short Videos to Teach Research Ethics

NASA Astrophysics Data System (ADS)

Loui, M. C.

2014-12-01

Created with support from the National Science Foundation, EthicsCORE (www.natonalethicscenter.org) is an online resource center for ethics in science and engineering. Among the resources, EthicsCORE hosts short video vignettes produced at the University of Nebraska - Lincoln that dramatize problems in the responsible conduct of research, such as peer review of journal submissions, and mentoring relationships between faculty and graduate students. I will use one of the video vignettes in an interactive pedagogical demonstration. After showing the video, I will ask participants to engage in a think-pair-share activity on the professional obligations of researchers. During the sharing phase, participants will supply the reasons for these obligations.

[Ethical dilemmas in health].

PubMed

Boléo-Tomé, J

2009-01-01

It is difficult to speak of ethic dilemmas in a society that has relativism as the oficial philosophical and political doctrine, i.e., stable values and behavior references, are denied, both in health care and in any other area of human knowledge. In the field of medical sciences it is even pretended to pass from the observational methodology to a field of manipulation and manipulability. It is the very Ethic that is presented as a dilemma. In these conditions one needs to know the lines of thought that are defended, to replace and make disappear the stable ethic references: ecletism, historicism, scientificism, pragmatism, and nihilism itself, that lead to the 'new ethic paradigm', that has created by itself a pseudo-spirituality. The truth is we are adrift in the 'Ethic of Convenience' which changes according to the majorities. In this setting the way to go is to rediscover the abandoned ethic values: only with an objective ethic, with sound references and foundations, it is possible to re-establish and perfect the patient-physician relationship, for a better social health. And this begins with the ethic problem of human life.

Foundations for Ethical Standards and Codes: The Role of Moral Philosophy and Theory in Ethics

ERIC Educational Resources Information Center

Freeman, Stephen J.; Engels, Dennis W.; Altekruse, Michael K.

2004-01-01

Ethical practice is a concern for all who practice in the psychological, social, and behavioral sciences. A central problem is discerning what action is ethically correct in a particular situation. It has been said that there is nothing so practical as good theory, because theory can help counselors organize and integrate knowledge. It seems,…

The "Ethics Rupture" Summit, Fredericton, New Brunswick, Canada, October 25-28, 2012.

PubMed

van den Hoonaard, Will C

2013-02-01

This report explains the background of the "Ethics Rupture" Summit held in New Brunswick, Canada, October 2012, focusing on the disconnect between research-ethics policies and the nature and purpose of social-science research-an unintended "rupture" in ethics governance. Ethics is about human relationships, and the governance of ethics must reflect that fact rather than function as a bureaucratic, self-legitimating system of control. The themes that emerged from the Summit point to: structural problems with the current system; an undermining of the original, historical mission of some social-science disciplines; a discomfort with new methodologies; ethics committees and the well-being and education of social-science students; the possibilities of reform and renewal; and the next steps. Finally, the report refers in broad outlines to a "New Brunswick Declaration," which is currently being considered by participants of the Summit.

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

PubMed

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

2015-01-01

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