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.

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)

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 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)

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)

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)

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)

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)

The social sciences playa variety of multifaceted roles in the policymaking process. So varied are these roles, indeed, that it is futile to talk in the singular about the use of social science in policymaking, as if there were one constant relationship between two fixed and stable entities. Instead, to address this issue sensibly one must talk in the plural about uses of dif ferent modes of social scientific inquiry for different kinds of policies under various circumstances. In some cases, (...) the influence of social scientific research is direct and tangible, and the connection between the find ings and the policy is easy to see. In other cases, perhaps most, its influence is indirect-one small piece in a larger mosaic of politics, bargaining, and compromise. Occasionally the findings of social scientific studies are explicitly drawn upon by policymakers in the formation, implementation, or evaluation of particular policies. More often, the categories and theoretical models of social science provide a general background orientation within which policymakers concep tualize problems and frame policy options. At times, the in fluence of social scientific work is cognitive and informational in nature; in other instances, policymakers use social science primarily for symbolic and political purposes in order to le gitimate preestablished goals and strategies. Nonetheless, amid this diversity and variety, troubling general questions persistently arise. (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)

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...

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)

This book approaches the problems and circumstances confronting blacks in the context of black values, the black community, and the role of government. ^BContents:: The Black Community's Values as a Basis for Action; The Community as Agent of Change; and The Government's Role in Meeting New Challenges.

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...

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 represents a dramatic revision of the centuries-old professional ethics that governed the behavior of physicians and their relationships with patients. This venerable ethics code was challenged in the years after World War II by the remarkable advances in the biomedical sciences and medicine that raised questions about the definition of death, the use of life-support systems, organ transplantation, and reproductive interventions. In response, philosophers and theologians, lawyers and social scientists joined together with physicians and scientists to rethink and (...) revise the old standards. Governments established commissions to recommend policies. Courts heard arguments and legislatures passed laws. This book is the first broad history of the growing field of bioethics. Covering the period 1947-1987, it examines the origin and evolution of the debates over human experimentation, genetic engineering, organ transplantation, termination of life-sustaining treatment, and new reproductive technologies. It assesses the contributions of philosophy, theology, law and the social sciences to the expanding discourse of bioethics. Written by one of the field's founders, The Birth of Bioethics is based on extensive archival research into sources that are difficult to obtain and on interviews with many of the leading figures in the moral debates in medicine. A very readable and comprehensive account of the evolution of bioethics, this book stresses the history of ideas but does not neglect the social and cultural context and the people involved. It will serve the information needs of philosophers, ethicists, social historians, and everyone interested in the origins of some of today's most hotly debated issues. (shrink)

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.

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)

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)

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)

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)

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)

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)

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)

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)

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)

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)

Debates about the ethics of health care and medical research in contemporary pluralistic democracies often arise partly from competing religious and secular values. Such disagreements raise challenges of balancing claims of religious liberty with claims to equal treatment in health care. This paper proposes several mid-level principles to help in framing sound policies for resolving such disputes. We develop and illustrate these principles, exploring their application to conscientious objection by religious providers and religious institutions, accommodation of religious priorities in biomedical (...) research, and treatment of patients’ religious views in doctor–patient encounters. Given that no sound set of guiding principles yields precise solutions for every policy dispute, we explore how morally sound democracies might deliberatively resolve such policy issues, following our proposed principles. Taken together and carefully interpreted, these principles may help in guiding difficult decision making in the indefinitely large realm where government, medical providers, and patients encounter problems concerning religion and medicine. (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)

If elective abortion is publicly funded, then the government is obligated to take active measures designed to reduce its prevalence. I present two arguments for that conclusion. The first argument is directed at those pro-choice thinkers who hold that while some or all elective abortions are morally wrong, they still ought to be legally permitted and publicly subsidized. The second argument is directed at pro-choice thinkers who hold that there is nothing morally wrong with elective abortion and that it (...) should be both legally permitted and publicly subsidized. The second argument employs premises that generalize beyond the abortion debate and that may serve to shed light on broader questions concerning conscience and the requirements of political compromise in a democracy. (shrink)

In 2021, the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the ‘Committee’) published its policy recommendations. It proposes, inter alia, a set of nine values and principles to inform the governance of human genome editing (HGE) and makes recommendations regarding how HGE can be regulated. While these proposals contain valuable contributions to the discourse on the global governance of HGE, they also contain elements that call for heightened attention to the (...) risks of the technology, and a countervailing focus on the potential benefits of the technology is missing. The Committee ostensibly prioritises restricting HGE technology in the interest of society as a collective but, in doing so, neglects to consider the interests and rights of individuals. In this article, we suggest that this approach is imbalanced insofar as it fails to give sufficient weight to the promise of this technology in considering the regulation of risks and disregards the importance of the fundamental liberties underlying the use of HGE in its discussion of values and principles that should guide governance. How this is problematic is illustrated with reference to the Committee's openness to using patents as HGE governance tools and its blanket rejection of ‘eugenics’. It is concluded that while the Committee makes some sensible recommendations on global governance, the Committee's approach of emphasising restrictions on HGE without also giving weight to the value of an open and liberal policy space is not something that liberal democratic states ought to follow. (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)

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)

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)

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)

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)

Bioethicists are often interested mostly in national standards and institutions, but state governments have historically overseen a wide range of bioethical issues and share responsibility with the federal government for still others. States ought to have an important role. By allowing for multiple outcomes, the American federal system allows a better fit between public opinion and public policies.

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)

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)

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)

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)

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 article is the first in a two-part review of policy design for human embryo research in Canada. In this article we explain how this area of research is circumscribed by law promulgated by the federal Parliament (the Assisted Human Reproduction Act ) and by guidelines issued by the Tri-Agencies (the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and Updated Guidelines for Human Pluripotent Stem Cell Research ). In so doing, we provide the first comprehensive account (...) of the rules currently governing human embryo research in Canada. In this article we also provide a chronological description of relevant policy initiatives and outcomes related to these policy instruments over the past 20 years, with particular attention to public involvement in policy design. This sets the stage for the second article (scheduled to appear in vol. 6 issue 3) in which we critically analyse the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit. Our goal is to carefully explain the various episodes of policy development and their corresponding outcomes, in order to more effectively address emerging questions about the legitimacy of future policy initiatives for human embryo research in Canada. (shrink)