Several presidents have created bioethics councils to advise their administrations on the importance, meaning and possible implementation or regulation of rapidly developing biomedical technologies. From 2001 to 2005, the President's Council on Bioethics, created by President George W. Bush, was under the leadership of Leon Kass. The Kass Council, as it was known, undertook what Adam Briggle describes as a more rich understanding of its task than that of previous councils. The council sought to understand what it means (...) to advance human flourishing at the intersection of philosophy, politics, science, and technology within a democratic society. Briggle's survey of the history of U.S. public bioethics and advisory bioethics commissions, followed by an analysis of what constitutes a "rich" bioethics, forms the first part of the book. The second part treats the Kass Council as a case study of a federal institution that offered public, ethical advice within a highly polarized context, with the attendant charges of inappropriate politicization and policy irrelevance. The conclusion synthesizes the author's findings into a story about the possible relationships between philosophy and policy making. "Adam Briggle has written a rich and sympathetic account of the President's Council on Bioethics led by Leon Kass. It puts in historical context the efforts of this council to move beyond the limited 'instrumentalist' approaches to bioethics taken by earlier commissions, toward a more philosophically serious effort to deliberate on the human goods put in play by modern biomedicine. In the process it answers many of the charges of politicization and corrects the record concerning the council's work." --_Francis Fukuyama, The Johns Hopkins School of Advanced International Studies_ "What an eloquent, humane, and wise book. Briggle discovers an imperfect yet fascinating effort to bring the world of biomedical research into the domain of public philosophy. His scholarship and generosity make clear that a democratic society need not be morally shackled to the realm of the possible that science is constantly expanding." --_Daniel Sarewitz, Consortium for Science, Policy, and Outcomes, Arizona State University _ "This is the most persuasive and thoughtful reconstruction of the Kass Council's goals and rationale that I have seen. Adam Briggle's account of the notion of a 'richer' bioethics is comprehensive an well-reasoned." --_Jonathan D. Moreno, University of Pennsylvania _ "Adam Briggle has written a fine book on a complex, controversial topic. He shows the wisdom of the approach to bioethics taken by the Kass Council, sets right the unfair and often nasty attacks on the council and Kass himself, and offers a perceptive and wide-ranging look at the terrain of ethics." --_Daniel Callahan, The Hastings Center _. (shrink)

What is 'legal' about bioethics? What are the ideas and artefacts that bioethics encompasses, and how are they related to law? What is the role of law in bioethics? In this work, Calvin Ho attempts to address these questions in the context of the governance of human pluripotent stem cell research. In essence, he argues that the hybridization of law, through processes, devices and techniques of juridification, has helped to constitute bioethics as a public sphere and (...) an emergent civic epistemology. Drawing on his multi-sited ethnographic fieldwork and on Actor-Network-Theory, Ho explains how the law has, through bioethics, contributed to the scientific and public understanding of human pluripotent stem cell research and its artefacts, particularly the embryo and human-animal combinations. Although the focus of his work is on bioethical developments in Singapore over a period of more than 15 years, parallel developments in key jurisdictions (especially the United States of America and the United Kingdom) and in international science policy are also evaluated. It is through appreciating how it has progressed that bioethics will be better able to engage with future challenges presented by advances in human embryo research and gene editing techniques, among others. (shrink)

Littoz-Monnet provides a fresh analysis of the enmeshment of expert knowledge with politics in global governance, through a unique investigation of bioethical expertise, an intriguing form of 'expert knowledge' which claims authority in the ethical analysis of issues that arise in relation to biomedicine, the life sciences and new fields of technological innovation. She makes the case that the mobilisation of ethics experts does not always arise from a motivation to rationalise governance. Instead, mobilising ethics experts - who are endowed (...) with a unique double-edged authority, both 'democratic' and 'epistemic' - can help policy-makers manoeuvre policy conflicts on scientific and technological innovations and make their pro-science and innovation agendas possible. Bioethical expertise is indeed shaped in a political and iterative space between experts and those who do policy. The book reveals the mechanisms through which certain global governance narratives, as well as the types of expertise they rely on, remain stable even when they are contested. (shrink)

Details goverment, private, and international response to the policy recommendations of the National Bioethics Advisory Commission.

The sequencing of the entire human genome has opened up unprecedented possibilities for healthcare, but also ethical and social dilemmas about how these can be achieved, particularly in developing countries. UNESCO's Bioethics Programme was established to address such issues in 1993. Since then, it has adopted three declarations on human genetics and bioethics (1997, 2003 and 2005), set up numerous training programmes around the world and debated the need for an international convention on human reproductive cloning. Negotiating (...) class='Hi'>Bioethics presents Langlois' research on the negotiation and implementation of the three declarations and the human cloning debate, based on fieldwork carried out in Kenya, South Africa, France and the UK, among policy-makers, geneticists, ethicists, civil society representatives and industry professionals. The book examines whether the UNESCO Bioethics Programme is an effective forum for (a) decision-making on bioethics issues and (b) ensuring ethical practice. Considering two different aspects of the UNESCO Bioethics Programme - deliberation and implementation - at international and national levels, Langlois explores: - how relations between developed and developing countries can be made more equal - who should be involved in global level decision-making and how this should proceed - how overlap between initiatives can be avoided - what can be done to improve the implementation of international norms by sovereign states - how far universal norms can be contextualized - what impact the efficacy of national level governance has at international level Drawing on extensive empirical research, Negotiating Bioethics presents a truly global perspective on bioethics. (shrink)

In an era when public faith in politicians is dwindling, yet trust in scientists remains relatively high, governments are increasingly emphasizing the role of science based policy-making in response to challenges such as climate change and global pandemics. In this paper we question the quality of some scientific advice given to governments and the robustness and transparency of the entire framework which envelopes such advice, all of which raise serious ethical concerns. In particular we focus on the so-called Imperial (...) Model which heavily influenced the government of the United Kingdom in devising its response to the COVID-19 crisis. We focus on and highlight several fundamental methodological flaws of the model, raise concerns as to the robustness of the system which permitted these to remain unchallenged, and discuss the relevant ethical consequences. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Private Bioethics Forums:Counterpoint to Government BodiesCynthia B. Cohen (bio) and Elizabeth Leibold McCloskey (bio)Ethical issues associated with reproductive technologies quickly gain public attention. The front pages of newspapers have featured stories about grandmothers giving birth to their own grandchildren, couples "renting" wombs from surrogates, and researchers prepared to transplant fetal ovaries into women unable to produce viable eggs. With each new and bolder foray into reproductive realms, (...) the question of whether to set limits on the use of such technologies surfaces. An ancillary debate inevitably ensues about the proper forum for discussing and deciding such limits. The recent announcement of human embryo splitting or cloning research is no exception to this pattern. Articles in both the popular press and academic circles in the wake of the reported research contain lamentations about the absence of a national ethics body that could address the ethical issues raised by the cloning experiment. This research also breathed new life into congressional calls to create a government bioethics commission.1At times, it appears that the substantive questions raised by a procedure like cloning are subsumed under the debate about whether this ethics group or that should be convened to study the matter. But the forum in which options are discussed is as crucial to the development of sound ethical thought and public policy as are the conclusions themselves. Thus, we address the question of whether a private, as opposed to a public, bioethics body provides a distinctively useful forum for reaching an understanding of issues such as cloning that have significant ethical and public policy implications.A 1993 Office of Technology Assessment report, in which the authors suggest that a new federal bioethics commission might be useful, has helped to frame recent discussions about the value of government-sponsored bioethics bodies (Office of Technology Assessment 1993). To most people, the question of whether a national forum for bioethics is needed is synonymous with the question of whether a new federal body should be convened. Yet the existence of the National Advisory Board on Ethics in Reproduction (NABER) suggests that the scope of the question should be broadened. [End Page 283]NABER was born in 1992, in part as a response to an Institute of Medicine report on infertility. That document endorsed the formation of a nongovernment body to develop guidelines for assisted reproductive measures and fetal research in the event that a government body was not forthcoming (Institute of Medicine 1989). NABER, which was founded by the American College of Obstetricians and Gynecologists and the American Fertility Society, now functions wholly independently of those groups and is supported by private foundations including the Ford, Greenwall, and Josiah Macy, Jr., Foundations and the Walter and Elise Haas Fund. NABER has issued a report on ethical issues related to the use of fetal tissue (Cohen and Jonsen 1993), is about to publish a report and background papers on oocyte donation, and presents a report on human cloning in this issue of the Kennedy Institute of Ethics Journal. In addition, it has developed a protocol for NABER review of research proposals from federal agencies subject to federal guidelines on the use of human subjects in research.Thus, in function and form, NABER was envisioned as a substitute for a government body, and it now functions in a manner similar to several types of government bioethics groups. Like the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission), NABER functions primarily through the publication of reports intended for a broad audience of practitioners, patients, policymakers, and the general public. Just as the Ethics Advisory Board of the late 1970s examined ethical issues related to specific protocols or types of research as they arose, NABER's purposes include scrutinizing the ethics of various research efforts in the reproductive area.NABER also parallels past government bodies in form. Like these groups, NABER is a multidisciplinary board that meets regularly and is supplemented by consultants and staff who provide research and writing for the board. Its members are nationally recognized in... (shrink)

In understanding the implicative resonance of biotech applications research and development, it is necessary to apply the intricate consonance of bioethics studies like behaviourome studies in the form of mental mapping in diverse groups of society for trying to resolve moral issues such as IPR or biosafety. Social perception analysis being the subjective domain of bioethics and related biotechnological issues are the functional epitome in ensuring benevolent biotechnological entrepreneurship development. In this pursuit studies of social genomics can ascertain (...) the positive implications of functional genomics being one of the most important fragments of science of biotechnology. The development of guidelines should be culturally sensitive in the way ethical, social and legal aspects are considered. Having a map of human ideas will enable us to reflect more diversity of ideas into policy frameworks. (shrink)

Abstract Environmental and public health-focused sciences are increasingly characterised as constituting an emerging discipline—planetary medicine. From a governance perspective, the ethical components of that discipline may usefully be viewed as bestowing upon our ailing natural environment the symbolic moral status of a patient. Such components emphasise, for example, the origins and content of professional and social virtues and related ethical principles needed to promote global governance systems and policies that reduce ecological stresses and pathologies derived from human overpopulation, selfishness and (...) greed—such as pollution, loss of biodiversity, deforestation and greenhouse gas emissions, as well as provide necessary energy, water and food security. Less well explored in this context, however, is the ethics that should underpin global use of emerging technologies such as nanotechnology as forms of planetary therapeutics. Nanotechnology may be particularly important, for instance, as a mechanism for improving upon photosynthesis and engineering it into human structures for localised production of carbon-neutral hydrogen based-fuel and carbohydrate-based food and fertilizer. Artificial photosynthesis, because of its unique and widespread public and environmental benefits in this period of human history, may even be termed the moral culmination of nanotechnology, assisting this planet to move beyond the Anthropocene epoch to that of the Sustainocene. This paper explores practical steps towards planetary nanomedicine involving governance of artificial photosynthesis, including a UNESCO Universal Declaration on the Bioethics and Human Rights of Natural and Artificial Photosynthesis (Global Solar Fuels and Foods ). Content Type Journal Article Category Original Paper Pages 1-13 DOI 10.1007/s11569-012-0144-4 Authors Thomas Faunce, College of Medicine, Biology and the Environment and College of Law (joint Appointment), Australian National University, Acton, Australia Journal NanoEthics Online ISSN 1871-4765 Print ISSN 1871-4757. (shrink)

This book offers a novel understanding of Israeli bioethics that is a milestone in the comparative literature of bioethics. Bringing together a range of experts, the book's interdisciplinary structure employs a contemporary, sociopolitical-oriented approach to bioethics issues, with an emphasis on empirical analysis, that will appeal not only to scholars of bioethics, but also to students of law, medicine, humanities, and social sciences around the world. Its focus on the development of bioethics in Israel makes (...) it especially relevant to scholars of Israeli society- both in and out of Israel-as well as medical practitioners and health policymakers in Israel. (shrink)

Juridical councils that render rulings on bioethical issues for Muslims living in non-Muslim lands may have limited familiarity with the foundational concept of wilāyah (authority and governance) and its implications for their authority and functioning. This paper delineates a Sunni Māturīdi perspective on the concept of wilāyah, describes how levels of wilāyah correlate to levels of responsibility and enforceability, and describes the implications of wilāyah when applied to Islamic bioethical decision making. Muslim health practitioners and patients living in the absence (...) of political wilāyah may be tempted to apply pragmatic and context-focused approaches to address bioethical dilemmas without a full appreciation of significant implications in the afterlife. Academic wilāyah requires believers to seek authentication of uncertain actions through scholarly opinions. Fulfilling this academic obligation naturally leads to additional mutually beneficial discussions between Islamic scholars, healthcare professionals, and patients. Furthermore, an understanding derived from a Māturīdi perspective provides a framework for Islamic scholars and Muslim health care professionals to generate original contributions to mainstream bioethics and public policy discussions. (shrink)

Two articles published in Bioethics recently have explored the ways that bioethics can contribute to the climate change debate. Cheryl Cox Macpherson argues that bioethicists can play an important role in the climate change debate by helping the public to better understand the values at stake and the trade-offs that must be made in individual and social choices, and Sean Valles claims that bioethicists can contribute to the debate by framing the issues in terms of the public health (...) impacts of climate change. While Macpherson and Valles make valid points concerning a potential role for bioethics in the climate change debate, it is important to recognize that much more than ethical analysis and reflection will be needed to significantly impact public attitudes and government policies. (shrink)

LeRoy Walters was a central figure in debates about federal policy regarding genetics and biotechnology—a neutral, publicly engaged philosopher and religious studies academic who put his skills to work in national service. His career spanned the emergence of biotechnology as a field in the 1970s until his retirement. His interests reached from moral philosophical theory to Holocaust studies to practical concerns about public policy in genetics. We focus here on the role of bioethics in policy related (...) to the advent of human gene transfer, the Human Genome Project, and the emergence of biotechnology as a commercial enterprise. We focus on his role as an academic influencing the government strand of the “triple helix”... (shrink)

Conley et al. (2023) analyze the attempts at public engagement (PE) by five governance groups. These projects were conducted by organizations that endorse both the goals and values of PE. The autho...

Jozef Keulartz and Gilbert Leistra (eds): Legitimacy in European Nature Conservation Policy: Case Studies in Multilevel Governance Content Type Journal Article Pages 1-3 DOI 10.1007/s10806-010-9248-4 Authors Sarah Beach, Kansas State University Department of Sociology, Anthropology, and Social Work Manhattan KS USA Journal Journal of Agricultural and Environmental Ethics Online ISSN 1573-322X Print ISSN 1187-7863.

This article examines the evolution of bioethics over the past four decades since the publication of John Harris’ seminal work, “The Value of Life” (1985). It argues that while the core principles articulated by Harris remain relevant, bioethics has undergone significant transformation across four key domains. First, the expanding frontiers of biotechnology have necessitated engagement with complex issues beyond individual clinical ethics. Second, there has been a widening of the circle of moral concern to encompass nonhuman animals, disability (...) rights, and global health equity. Third, bioethics has become increasingly entangled with public policy and governance. Finally, the field has seen substantial academic proliferation and institutionalization. These developments have pushed bioethics to adapt its frameworks and methodologies while maintaining fidelity to foundational principles. This article concludes by considering the future challenges and opportunities for bioethics in an increasingly complex technological and social landscape. (shrink)

Asian Bioethics Conference (ABC20) was held on 22-25 Nov. 2019 at DGHS (Directorate General of Health Services) auditorium, Mohakhali and NEC (National Election Commission) Auditorium, Agargoan, Dhaka. Conference was organized by Bangladesh Bioethics Society (BBS) in cooperation of DGHS, Ministry of Health & Family Welfare; Social Science Research Council Bangladesh, Ministry of Planning; Bangladesh Medical Research Council, Mohakhali Dhaka; Asian Bioethics Association (ABA) and Eubios Ethics Institute, Thailand, New Zealand’s and Japan. Mr MA Mannan MP, Honorable Planning (...) Minister, Government of the People’s Republic of Bangladesh was the Chief Guest. Dr. Md. Murad Hassan MP, Honorable State Minister, Ministry of Information, Government of the People's Republic of Bangladesh was present as Special Guest. Md. Nurul Amin, Secretary, Planning Division, Ministry of Planning and Dr Iqbal Kabir, Director, Planning, Monitoring, & Research and Coordinator, DGHS were also present as Special Guests. Bioethics promotes strong ethical values, practice of ethics and morality in Science, Social Science, Commerce and Arts. The conference brought together scholars and policy makers from different disciplines from all around the world to discuss and deliberate the latest issues of bioethics in biomedicine, biotechnology, science, social science, education and research. Around 300 participants from different universities and government officials including 40 foreign delegates from Asia & Pacific and beyond were present at the conference. (shrink)

In Canada, as in many developed countries, healthcare conscientious objection is growing in visibility, if not in incidence. Yet the country's health professional policies on conscientious objection are in disarray. The article reports the results of a comprehensive review of policies relevant to conscientious objection for four Canadian health professions: medicine, nursing, pharmacy and dentistry. Where relevant policies exist in many Canadian provinces, there is much controversy and potential for confusion, due to policy inconsistencies and terminological vagueness. Meanwhile, in (...) Canada's three most northerly territories with significant Aboriginal populations, whose already precarious health is influenced by funding and practitioner shortages, there are major policy gaps applicable to conscientious objection. In many parts of the country, as a result of health professionals' conscientious refusals, access to some legal health services – including but not limited to reproductive health services such as abortion – has been seriously impeded. Although policy reform on conscientious conflicts may be difficult, and may generate strenuous opposition from some professional groups, for the sake of both patients and providers, such policy change must become an urgent priority. (shrink)

Bioethics plays a pivotal role in guiding ethical decision-making within the realm of medical research and healthcare. However, the influence of geopolitics on bioethical considerations, particularly regarding bioweapons research, remains an underexplored area. This study delves into the uncharted territory of how international political interests can intersect with bioethical principles, potentially shaping collaborative efforts and global health policies related to bioweapons research. Through a hypothetical scenario involving a hypothetical pathogen, a collaborative effort between unspecified countries, we examine the implications (...) of such cooperation on global health governance, with a specific focus on bioweapons research. Ethical dilemmas surrounding responsible research, potential risks and benefits, equitable distribution of findings, and biosafety measures are explored. This analysis underscores the importance of transparent and responsible practices in bioweapons research amidst geopolitical tensions. By striking a balance between national interests and international solidarity, we advocate for robust bioethical frameworks to navigate such collaborations for the collective well-being of humanity and to mitigate potential risks associated with bioweapons research. (shrink)

Universal access to antiretroviral treatment (ART) in Chad was officially declared in December 2006. This presidential initiative was and is still funded 100% by the country’s budget and external donors’ financial support. Many factors have triggered the spread of AIDS. Some of these factors include the existence of norms and beliefs that create or increase exposure, the low-level education that precludes access to health information, social unrest, and population migration to areas of high economic opportunities and gender-based discrimination. Social forces (...) that influence the distribution of dimensions of well-being and shape risks for infection also determine the persistence of access barriers to ART. The universal access policy is quite revolutionary but should be informed by the systemic barriers to access so as to promote equity. It is not enough to distribute ARVs and provide health services when health systems are poorly organized and managed. Comprehensive access to ART raises many organizational, ethical and policy problems that need to be solved to achieve equity in access. This paper argues that the persistence of access barriers is due to weak health systems and a poor public health leadership. AIDS has challenged health systems in a manner that is essentially different from other health problems. (shrink)

The COVID-19 pandemic brought about at least two normative challenges on unprecedented scale for liberal democracies. One concerned prioritization decisions when health care resources were constrained. The other, which arguably led to lasting damage to social cohesion and citizens’ trust in government and government public health institutions, concerned policies introduced with the aim of reducing the spread of SARS-CoV2, some of which turned out to be mistaken. I discuss in this essay a few examples of misguided, liberty-limiting public (...) health policies and describe how public health and public health ethics principlism provided cover for such policies. Citizens had reasons to be concerned about the duration of such liberty-infringing policies, the absence of predictable government policies, and the absence of transparent justifications for the policies that were implemented. (shrink)

This issue’s target articles cover some of the most hotly debated topics in neuroethics: neurorights and the potential establishment of international governance frameworks for neurotechnology. The...

Whilst the notion of bioethical expertise might raise a host of questions concerning moral authority it is nevertheless the case that bioethicists continue to advance well thought out, detailed and comprehensive arguments concerning the ethical implications of the biosciences and healthcare. Not to make use of such work or those who produce it when it comes to the work of government and the development of policies would seem misguided at best. Thus, in the light of existing analysis of scientific (...) expertise and its proper contribution to democratic political processes, this essay explores the role expert bioethicists might legitimately play in the production of policy and broader public moral debates. However, given that ethics can shade into politics and, furthermore, does so in a way that is not the case for science and politics, the ethico-political limitations that constrains and constructs the exercise of bioethical expertise is examined. Particular attention is paid to the implications of this view when it comes to bioethical research predicated on religious perspectives in the context of public reason, the validity of which has recently been called into question. We conclude with the suggestion that, if they are to act as experts in political contexts, bioethicists cannot simply make expert contributions to policymaking processes, they should also acknowledge they are responsible for shaping the broader public moral discourses about science and medicine. (shrink)

Continuing rapid developments in the life sciences offer the promise of providing tools to meet global challenges in health, agriculture, the environment, and economic development; some of the benefits are already being realized. However, such advances also bring with them new social, ethical, legal, and security challenges. Governance questions form an increasingly important part of the discussions about these advances--whether the particular issue under debate is the development of ethical principles for human genome editing, how to establish regulatory systems for (...) the safe conduct of field trials of gene drive-modified organisms, or many others. However there are continuing concerns that the knowledge, tools, and techniques resulting from life sciences research could also enable the development of bioweapons or facilitate bioterrorism. Between June 10 and 13, 2018, more than 70 participants from 30 different countries and 5 international organizations took part in an international workshop, The Governance of Dual Use Research in the Life Sciences: Advancing Global Consensus on Research Oversight, in Zagreb, Croatia. Hosted by the Croatian Academy of Sciences and Arts, the workshop was a collaboration among the InterAcademy Partnership, the Croatian Academy, the Croatian Society for Biosafety and Biosecurity, and the U.S. National Academies of Sciences, Engineering, and Medicine. This publication summarizes the presentations and discussions from the workshop."--Publisher's description. (shrink)

Background The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. Methods The GFBR is an annual meeting organized by the (...) World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022. Results We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships. Conclusions The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:An Egg Takes Flight: The Once and Future Life of the National Bioethics Advisory Commission*Alexander Morgan Capron (bio)Attempting to describe the National Bioethics Advisory Commission (NBAC) is comparable to the surreal feat performed by the artist in a famous painting by René Magritte. The artist (Magritte himself) sits with his back to the viewer, a palette in his left hand. The brush in his right hand is (...) raised to a canvas, blank except for a bird in flight that he is in the process of painting. The artist is looking to his left at a tabletop, bare except for a single, plain egg.Having held its second formal meeting in mid-January, NBAC is certainly still embryonic, its future mysterious within its shell. Yet answers to four major questions that will determine not just what kind of bird the Commission turns out to be but the heights to which it will fly should be evident by April or May 1997. First, will the White House take the sort of interest in NBAC that is needed if it is to succeed? Second, will the Commission’s term be extended beyond October 1997—and will the decision come early enough to allow it to start soon on projects that will take more than a single year to complete? Third, will the Commission take a broad view of the issues it addresses, reexamining widely accepted assumptions and going back to basic premises, or will it respond primarily in bureaucratic terms, guided by its charter’s focus on improving the policies and practices of federal departments and agencies? Fourth, will the Commission move beyond its initially mandated topics—the rights and welfare of human research subjects and the management and use of genetic information—and become what its name promises, the nation’s advisory body on the full range of bioethical issues that arise in the organization and management of health services and research?The Origins of the Egg: NBAC’s PredecessorsThe creation of a national bioethics commission has been demanded for years, at the least since its most recent predecessor, the Biomedical Ethics [End Page 63] Advisory Committee (BEAC) finally expired in 1990. BEAC’s statutory authority lapsed after the hapless committee had spent several years itself like an in vitro embryo in a vat of liquid nitrogen. BEAC’s opponents in Congress froze its appropriation and forbad it to meet until the Biomedical Ethics Board of six senators and six representatives to which it was supposed to report resolved the chaos resulting from the Board members’ ideological differences and personal distrust; this never occurred, and the Board proved unable even to choose its chairman. 1 BEAC, which met only twice, had laid preliminary plans to study the issues raised by the new genetics, but the politics of abortion—which had greatly complicated and slowed the Board’s naming of the BEAC members—was strong enough to interfere even with the topic of genetics, on which the difference among committee members actually gave no sign of dividing on pro-life/pro-choice grounds.The disappearance of BEAC left the nation without a mechanism for “public bioethics,” and several efforts were undertaken in the early 1990s to generate a new commission that could carry on in the tradition of the two previous, successful bioethics commissions. (The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research operated under a Congressional mandate in the Department of Health, Education, and Welfare from 1974 to 1978, and the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, which had been authorized by Congress in 1978, actually operated as an independent body with government-wide purview from January 1980 to March 1983.) The Institute of Medicine established a committee to assess the mechanisms available not only to the federal government but also to states, professional bodies, and the public for deliberating about and resolving ethical issues stemming from developments in biomedicine (Bulger, Bobby, and Fineberg 1995). In September 1992, Senators Mark O. Hatfield (R-OR), Edward M. Kennedy (D-MA), and Dennis DeConcini (D-AZ) requested that the Office of Technology Assessment (OTA) evaluate the... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics Commissions: Town Meetings with a “Blue, Blue Ribbon”Susan Cartier Poland (bio)Town meetings are characteristic of New England. In theory, a quorum of registered voters in a small municipality meets annually to decide local public policy. In fact, special interests and the town bureaucracy control the meeting.Like a town meeting, a commission (or committee or council) comes into being, whether on an ad hoc or permanent basis, (...) to direct a government function. Bioethics commissions specialize in one area: the intersection of public policy with developments, either real or anticipated, in the basic and applied sciences.That specialization of commissions carries over into the selection of the members. More often than not commission members are appointed on the basis of expertise in a specific area. Although some commissions are still made up entirely of one kind of expert, usually medical, the majority of these government bodies seek breadth between the fields of law, religion, ethics, and science (including medicine and the social sciences).In the words of Mrs. Rigenbach, the law clerk to Chief Judge Carl B. Rubin of the United States District Court for the Southern District of Ohio, selection of persons “knowledgeable in the field” constitutes a “blue, blue ribbon” jury. In contrast, a “blue ribbon” jury is composed of those persons having “the greatest amount of formal education” (In re Richardson-Merrill, Inc. (Bendectin litigation), 624 Federal Supplement 1212 at 1217 (1985)). The problem with persons knowledgeable in the field is that their minds may have already been made up. For a jury, this is a disaster; for a bioethics commission, this directs and shapes the research, investigation, and discussion, or, in short, it makes for more efficient decision making.For this Scope Note, the definition of commission begins with the Bioethicsline description of its index term “advisory committees” as committees or commissions set up to advise government bodies on public policy. Furthermore, a commission [End Page 91] (or committee) receives government funding and support in exchange for its expertise in research, investigation, reporting, and recommendations.Six functions served by bioethics commissions have been clearly and succinctly described by LeRoy Walters (Commissions and Bioethics. Journal of Medicine and Philosophy 14 (4): 363–68, August 1989). The functions are: (1) to legitimize action; (2) to delay action or resolution; (3) to identify duplication; (4) to be representative; (5) to do research and find facts; and (6) to provide education and support (pp. 364–65). Since 1989, however, another government function has moved to the forefront. Instead of remaining within the legislative arena, government commissions serve the judiciary as well, in cases involving complex and technical questions. The now defunct Law Reform Commission of Canada recognized this use when it included in its annual reports a section on its “Influence on Law Reform through Judicial Decisions.”In mid-1997, the United States Supreme Court in its consolidated cases on assisted suicide used extensively the writings from a state commission, the New York State Task Force on Life and the Law, to support its rationale. Not only did the Court make use of the Task Force’s work, but in so doing the Court extended the efforts of the commission beyond its jurisdiction of New York into another jurisdiction on the opposite coast, Washington state. Furthermore, although the commission was chartered by one state, through the federal court system, its influence became national.Outside the U.S., the United Nations recently adopted its first bioethics text on the ethics of genetic research, and Canada is reworking its human research guidelines into a single set of guidelines that will apply to research in both the natural sciences and the social sciences.This Scope Note attempts to compile for the researcher and the reference librarian those commissions, existing and defunct, that have addressed bioethics issues. Only one other such attempt is known to the author, an Office of Technology Assessment [OTA] Background Paper, Biomedical Ethics in U.S. Public Policy (1993). Due to space limitations, not all publications could be listed; the selections included represent the range of topics from a particular group or the more frequently cited sources. Future updates of this compilation are planned, so please notify the... (shrink)

Genome editing is a technology that can accurately and efficiently modify the genome of organisms, including the human genome. Although human genome editing (HGE) has many benefits, it also involves technical risks and ethical, legal, and social issues. Thus, the pros and cons of using this technology have been actively debated since 2015. Notably, the research community has taken an interest in the issue and has discussed it internationally. However, for the governance of HGE, the roles of government agencies (...) and the general public are also important for an effective regulatory system. Here, we examine the roles of the research community, government, and public in the governance of HGE through an analysis of discussions in the Japanese Expert Panel on Bioethics. During the discussion of the research ethics review system, the professionalism of the research community and the pros and cons of state oversight have become issues for debate. Furthermore, through an examination of the overall policy-making process, three stakeholders are clearly involved in the governance of emerging medical technologies in the Expert Panel on Bioethics, a discussion forum established by government agencies. The contrast among these roles provides insight into the positive roles of government agencies and the research community and the conditions under which these roles are played. We also note that there are diverse actors in the public, which may have an impact on their participation. Our results may serve as a guide for countries and organizations to establish governance on emerging medical technologies. (shrink)

Governments must determine the legal procedures by which their residents are registered, or can register, as organ donors. Provided that governments recognize that people have a right to determine what happens to their organs after they die, there are four feasible options to choose from: opt-in, opt-out, mandated active choice, and voluntary active choice. We investigate the ethics of these policies' use of nudges to affect organ donor registration rates. We argue that the use of nudges in this context is (...) morally problematic. It is disrespectful of people's autonomy to take advantage of their cognitive biases since doing so involves bypassing, not engaging, their rational capacities. We conclude that while mandated active choice policies are not problem free—they are coercive, after all—voluntary active choice, opt-in, and opt-out policies are potentially less respectful of people's autonomy since their use of nudges could significantly affect people's decision making. (shrink)

Heated debates over healthcare policy in the United States point to the need for a legal framework that can sustain both moral diversity and peaceful cooperation. It is argued that the classical liberal Rule of Law, with its foundation in the ethical principle of permission, is such a framework. The paper shows to what extent the current healthcare policy landscape in the United States diverges from the rule of law and suggests how the current framework could be modified (...) in order to better approximate that ideal. Two objections are then answered. The first is that the rule of law cannot be realized due to the structure of legislatures. The second objection is that government should guarantee both liberty and all of the necessary conditions of autonomy. (shrink)

In this article, I ask whether a principle analogous to the principle of clinical equipoise should govern the design and conduct of RCTs evaluating the effectiveness of policy interventions. I answer this question affirmatively, and introduce and defend the principle of policy equipoise. According to this principle, all arms of a policy RCT must be, at minimum, in a state of equipoise with the best proven policy that is also morally and practically attainable and sustainable. For (...) all arms of a policy RCT, policy experts must either reasonably disagree about whether the trial arms are more effective than this policy, or know that they are. (shrink)

The COVID-19 pandemic has highlighted the importance of biosafety in the biomedical sciences. While it is often assumed that biosafety is a purely technical matter that has little to do with philosophy or the humanities, biosafety raises important ethical issues that have not been adequately examined in the scientific or bioethics literature. This article reviews some pivotal events in the history of biosafety and biosecurity and explores three different biosafety topics that generate significant ethical concerns, i.e., risk assessment, risk (...) management, and risk distribution. The article also discusses the role of democratic governance in the oversight of biosafety and offers some suggestions for incorporating bioethics into biosafety practice, education, and policy. (shrink)

This issue of the Hastings Center Report features a couple of interesting takes on the governance challenges of emerging technologies. In an essay on the National Academies of Science, Engineering, and Medicine report published this February on human germ-line gene editing, Eric Juengst, a philosopher at the University of North Carolina, argues that the NASEM committee did not manage to rethink the rules. Juengst reaches what he calls an “eccentric conclusion”: “The committee's 2017 consensus report has been widely interpreted as (...) ‘opening the door’ to inheritable human genetic modification and holding a line against enhancement interventions. But on a close reading it does neither.” In the column Policy and Politics, Sarah Chan, a chancellor's fellow at the University of Edinburgh, discusses the emerging science of “organoids,” “embryoids,” and “synthetic human entities with embryo-like features” and calls for a sustained effort to rethink the rules for embryo research. (shrink)

Bioethicists working on national ethics commissions frequently think of themselves as advisors to the government, but distance themselves from any claims to actual authority. Governments however may find it beneficial to appear to defer to the authority of these commissions when designing laws and policies, and might appoint such commissions for exactly this reason. Where does the authority for setting laws and policies come from? This question is best answered from within a normative political philosophy. This paper explains the (...) locus of moral authority as understood within one family of normative political theories—liberal political theories—and argues that most major “liberal” commentators have understood both the source and scope of ethics commissions’ authority in a manner at odds with liberalism, rightly interpreted. The author argues that reexamining the implications of liberalism for bioethics commissions would mean changing what are considered valid criticisms of such commissions and also changing the content of national bioethics commission mandates. The author concludes that bioethicists who participate in such commissions ought to carefully examine their own views about the normative limits of governmental authority because such limits have important implications for the contribution that bioethicists can legitimately make to government commissions. (shrink)

The Dobbs decision has precipitated renewed medical, political, and professional interest in the issue of abortion. Because this decision handed responsibility for regulation of abortion back to the states, and because the states are enacting or have enacted policies that tend to be very permissive or very restrictive, the result has been legal and professional confusion for physicians and their patients. Medical education cannot resolve either the legal or ethical issues regarding abortion. However, medical education must prepare future physicians for (...) caring for patients seeking abortion-related services. Physicians must be prepared to interact appropriately (sensitively and with integrity) with patients or colleagues whose views on abortion differ significantly from their own. This essay describes our educational effort to achieve that objective. The motto that governed this exercise was “No Easy Answers.”. (shrink)

Scientists have the ability to influence policy in important ways through how they present their results. Surprisingly, existing codes of scientific ethics have little to say about such choices. I propose that we can arrive at a set of ethical guidelines to govern scientists’ presentation of information to policymakers by looking to bioethics: roughly, just as a clinician should aim to promote informed decision-making by patients, a scientist should aim to promote informed decision-making by policymakers. Though this may (...) sound like a natural proposal, I show it offers guidance that conflicts with standard scientific practices. I conclude by considering one cost of the proposal: that it would prevent scientists from acting as advocates in a way that is currently common in certain fields. I accept that the proposal would restrict scientists’ political advocacy rights, but argue that the benefits of adopting it — promoting democratic governance — justify the restriction. (shrink)

This paper argues that some of the misunderstandings surrounding the meaning and function of the concept of human dignity in bioethics arise from a lack of distinction between two different roles that this notion plays: one as an overarching policy principle, and the other as a moral standard of patient care. While the former is a very general concept which fulfils a foundational and a guiding role of the normative framework governing biomedical issues, the latter reflects a much (...) more concrete and context-specific understanding of the patient as a “person”. The importance of dignity as a policy principle will be described by appealing to the distinction between principles and rules as developed by some legal philosophers. The value of dignity as a standard of patient care will be illustrated with the help of concrete examples and by drawing on the taxonomies of dignity proposed by Jonathan Mann and other scholars. The overall scope of the article is to highlight this double and complementary role of human dignity in bioethics. (shrink)

Current developments in biomedicine are presenting us with difficult ethical decisions and raising complex policy questions about how to regulate these new developments. Particularly vexing for governments have been issues related to human embryo experimentation. Because some of the most promising biomedical developments, such as stem cell research and nuclear somatic transfer, involve such experimentation, several international bodies have drafted documents aimed to provide guidance to governments when developing biomedical science policy. Here I focus on two such documents: (...) the Council of Europe's Convention for the Protection of Human Rights and Dignity of the Human Being and the Additional Protocol to the Convention for the Protection of Human Rights and Dignity of the Human Being.I argue that by using human dignity as a criterion to determine the permissibility of particular human embryo research practices, these documents cannot aid in identifying research that would be contrary to human dignity. Thus, they fail to guide public policy on embryo experimentation. Their use of human dignity as a criterion makes their task of offering guidance unfeasible because the concept as used in these documents is too vague and is applied in contradictory ways. I discuss the main goals of these documents and their claims in relation to human embryo research. I then discuss how they have influenced public policy in several countries. Finally, I show that although these Council of Europe treaties attempt to serve as public policy guides in the area of embryo research, they fail to do so. (shrink)

Linguistic capital is what is at issue when we ask who can speak for a religion. But asking who has the linguistic capital to speak for a religious community in public policy forums is different from asking who has linguistic capital within the religious community. The first question forces us to examine the acquisition of linguistic capital in three separate — yet overlapping — fields of social discourse: academia, religion, and government. Each of these requires distinctive ways of (...) earning the necessary social capital to be authorized to speak. The issue of who has the status to speak for a religion in a political forum is essentially a question of what types of linguistic capital gained in one field are deemed legal tender within another field. (shrink)

Medical research involving human subjects raises complex ethical, legal and social issues. Investigators sometimes find that their obligations with respect to a research project come into conflict with their obligations to individual patients. The ethical conduct of research rests on 3 guiding principles: respect for persons, beneficience, and justice. Respect for persons underlies the duty to obtain informed consent from study participants. Beneficence demands a favourable balance between the potential benefits and harms of participation. Justice requires that vulnerable people not (...) be exploited and that eligible candidates who may benefit from participation not be excluded without good cause. Studies must be designed in a way that ensures the validity of findings and must address questions of sufficient importance to justify the risks of participation. In any clinical trial there must be genuine uncertainty as to which treatment arm offers the most benefit, and placebo controls should not be used if effective standard therapies exist. Researchers have a responsibility to inform themselves about the ethical, legal and policy standards that govern their activities. When difficulties arise, they should consult the existing literature and seek the advice of experts in research ethics. (shrink)

Bangladesh is a Muslim-majority society with more than 163 million people. Most Bangladeshis hold the ideals of Islamic norms and values which is manifest in all sorts of socio-cultural behaviour. In reference to such values, the tradition of legitimizing child marriage in Bangladesh is the issue that needs to be addressed in a holistic yet rigorous approach. Currently Bangladesh ranks 4th in the world and 1st in Asia in terms of child marriage. Recently the Child Marriage Restraint Act 1929 has (...) been abolished and it has been replaced by the Act of 2017 preserving article 2 of the previous statute, the legal age for marriage for a boy 21 and for a girl 18. This Act adds article 19 which legalizes minors (below 18 years of age) to be married off with the consent of the parents/guardians at the presence of a magistrate under “special circumstances” deemed with securing the best interest for them. The law artfully coincides with the Muslim Marriage Law which allows participants of 15 years and above to get legally married and as such contradicts the international law and the Act of 2017 itself. In the West intimate relationships including extra-marital cohabitation before reaching 18 years of age are culturally accepted. In contrast, such extra-marital and intimate relationships are strictly prohibited in Muslim-majority societies, which are dearly adhered in Bangladeshi Muslim culture. This study examines how the religious cultural and socio-economic realities influence child marriage practice in Bangladesh. Along with secondary documents, we interviewed 22 individuals including the Deputy Commissioner, the District Women and Children Affairs Officer, elected Union Parishad Chairman and Members, Social Workers, married couples and their parents/guardians at Manikganj district. In addition, we also conducted a mass survey with 62 randomly selected participants, and a voluntary online survey where the opinion of another 53 young students were collected to find broad opinion. We also collected stories of how marriages take place at the rural, urban and sub-urban areas in Bangladesh. The study has revealed that Bangladeshis does not support marriage at early ages but socio-economic reality often pushes poor into getting their children married at early ages. Many view that the special provision may encourage child marriage in the country. This study suggests that the government of Bangladesh should redefine public policy in regard to finding a middle ground between Islamic ethics and international values by exploring isomorphic mimicry and other socio-culturally accepted measures with a view to abolishing child marriage successfully. (shrink)

This highly speculative paper seeks to discern where the discipline of Bioethics may be heading in the next decade or two. It is clear that the rapid pace of scientific discovery and technological innovation will not slacken, and, as a result, fresh moral issues, for which there are no precedents in currently accepted moral wisdom, will rapidly emerge. This mushrooming of ethical problems will be taking place at a time of increasing moral pluralism, when common moral values become harder (...) to establish, and powerful subgroups embrace moral dogmatism, whether religious or secular in character.Faced with such complexity and confusion, governments and industrial groups will increasingly seek guidance from bioethics "experts", through paid consultancies, advisory panels and commissioned reports on specific topics. But Bioethics itself is currently in a stage of flux: 1. Certain research areas in Bioethics have 'bolted' (in the horticultural sense), because of a rich injection of funds - notably genetics and stem cell research - while other areas are relatively under-researched. 2. Inter-disciplinarity has become de rigueur, largely under funder pressure, and, allied to this, an insistence on empirical work has created conceptual confusions. 3. There is a continuing ferment in bioethical theory, with little sign of productive co-operation between rival camps. Indeed theoretical enrichment seems to lag far behind the constant demand for relevance and 'applied ethics'.So what of the future? I detect certain trends, some to be deplored and discouraged, others to be applauded and nurtured. On my 'black list' are: the commercialisation of Bioethics; and the dumbing down of several critical disciplines in the name of relevance. On my 'white list' are: further adventures in theory; inter-disciplinarity come of age; and the future envisioned in today's young minds. (shrink)

In recent years, there has been a growing interest in finding stronger means of securitising identity against the various risks presented by the mobile globalised world. Biometric technology has featured quite prominently on the policy and security agenda of many countries. It is being promoted as the solution du jour for protecting and managing the uniqueness of identity in order to combat identity theft and fraud, crime and terrorism, illegal work and employment, and to efficiently govern various domains and (...) services including asylum, immigration and social welfare. In this paper, I shall interrogate the ways in which biometrics is about the uniqueness of identity and what kind of identity biometrics is concerned with. I argue that in posing such questions at the outset, we can start delimiting the distinctive bioethical stakes of biometrics beyond the all-too-familiar concerns of privacy, data protection and the like. I take cue mostly from Cavarero’s Arendt-inspired distinction between the “what” and the “who” elements of a person, and from Ricoeur’s distinction between the “idem” and “ipse” versions of identity. By engaging with these philosophical distinctions and concepts, and with particular reference to the example of asylum policy, I seek to examine and emphasise an important ethical issue pertaining to the practice of biometric identification. This issue relates mainly to the paradigmatic shift from the biographical story (which for so long has been the means by which an asylum application is assessed) to bio-digital samples (that are now the basis for managing and controlling the identities of asylum applicants). The purging of identity from its narrative dimension lies at the core of biometric technology’s overzealous aspiration to accuracy, precision and objectivity, and raises one of the most pressing bioethical questions vis-à-vis the realm of identification. (shrink)

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

The Islamic government of Iran recently passed and announced a new law titled “Rejuvenation of the Population and Protection of the Family.” This legislation is a noteworthy example of biopolitics‐influenced biolaw. In terms of abortion, contraception, prenatal screening, and population control, this law clearly contrasts with women's fundamental rights and freedoms and has significant health‐related consequences for different sectors of the population. A historical review of the population policies of the Islamic Republic of Iran shows the occurrence of multiple (...) abrupt and radical changes in such policies over the past four decades. This new law, promoted by religious biopolitics, is the most recent example, and places stringent limits on abortion. According to it, all decisions concerning abortion must be made in courts rather than in health clinics. Such courts are typically presided over by male religious scholars. This law also limits prenatal screening to the degree that will increase the rate of genetic defects, especially in the population's lower socioeconomic strata. By strictly limiting access to contraception, this law will increase the rate of unwanted pregnancies and sexually transmitted diseases. This paper argues that such an influence of biopolitics on biolaw contrasts with the principles of bioethics. Still, Iran's current institution of bioethics cannot address it effectively. Therefore, a new model of interaction between bioethics, biopolitics, and biolaw is needed to prevent the detrimental consequences of such pieces of legislation. Such a paradigm shift is demanded by the current “Woman, Life, Freedom” movement of the Iranian people. (shrink)

The apportionment of responsibility for health policy within multi‐level states should be sensitive to a number of conflicting normative pressures, some of which militate for placing decision‐making authority at the higher reaches of policy‐making structures, while others would seem to require placing them lower down this structure. The principle of subsidiarity is a structural principle that addresses in a manner that is neutral with respect to these values a way of addressing the conflicting claims of these values. Standard (...) accounts of federalism fare poorly with respect to the criterion of subsidiarity. While central governments are at first glance better equipped to apply such a principle to the issue of the distribution of authority, there are strong empirical grounds for thinking that centralized governments will non‐neutrally privilege central authorities in applying the principle. Federal structures that admit of overlapping jurisdictions, and that therefore require that deliberation among federal parties occur as a condition of the problem of the distribution of powers over health care being solved, are most amenable to solving problems of distribution of authority. (shrink)

Ethics as a field should, we argue, pay more attention to the (eco)system. Van Rensselaer Potter, one of the pillars of contemporary bioethics, advocated for a global “bios” ethics that literally and metaphorically bridges the gap between biological knowledge and ethical reflection. However, a Potterian Bio-Ethics faces a major obstacle: its acentric focus. Consequently, Global Bio-Ethics remains opaque for those trained under the anthropocentric biomedical ethics that instrumentalizes the environment. This paper aims to demystify two key concepts—Globality and Complexity—and (...) show how a Potterian Bio-Ethics can effectively bridge the gap between knowledge-building in ecology and policy-making in the context of medical and environmental practices. Drawing on an experience in Québec, Canada, to mitigate the threat of antimicrobial resistance using a biosurveillance system, we show the utility of having ethics as an integral part of ecosystem(ic) approaches to bridge health and environment. We conclude by arguing that bioethics (and bioethicists) should become a locus for cascading communication, collaboration, and translation by co-constructing biosurveillance data governance. (shrink)