In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind (...) the Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:President’s Council on BioethicsEdmund D. Pellegrino (bio) and F. Daniel Davis (bio)Approximately two weeks before what was to have been its final meeting, the White House dissolved the President’s Council on Bioethics by terminating the appointments of its 18 members. The letters of dismissal, dated 10 June 2009, informed the members that their service on the Council would end with the close of business the (...) next day.The Council’s term was set to expire on 30 September 2009. After President Obama’s election in November and during the transition, we were advised to proceed on the assumption that the Council would be permitted to cease on that date. Reasons for the abrupt move to disband the Council are unknown. We have accepted the fact that we Council members served at the pleasure of the President and that he simply exercised his rightful prerogative. No explanation is therefore required.Some observers have speculated that the action was retaliatory. They related to the fact that several members of the Council disagreed with the President’s stem cell policy in a signed statement published in the Hastings Center’s Bioethics Forum. Others have speculated that the move was pre-emptive. At its final meeting, scheduled for 25–26 June, the Council was set to sign-off on two of its final publications. One was a comprehensive report on the ethics of organ transplantation, and the other a white paper entitled Health Care and the Common Good. The aim was immediately to release the latter as a contribution to the intensifying debate about health care reform. Health Care and the Common Good could well have aided rather than impeded the President’s drive to better control health care costs and achieve universal coverage. The Council report attempted to ground both goals in the ethical framework of, as the title indicates, the common good of all Americans.In his letter terminating the members’ appointments, Assistant to the President for Presidential Personnel Don Gips said that the President “recognizes the values of having a commission of experts in bioethical issues to provide objective and non-ideological bioethics advice to his administration.” Gips went on to say that the President is “currently rethinking the purposes and goals of such a bioethics commission, and is carefully considering a revitalized mission and mandate.” And, [End Page 309] responding to media enquiries, White House press officer Reid Cherlin explained that the President’s Council was terminated because it was a “philosophically leaning advisory group” and, according to a New York Times account by Nicholas Wade, “because it favored discussion over developing a shared consensus.” As for the ultimate outcome of the President’s “rethinking,” Cherlin indicated that President Obama will appoint a new commission with the mandate of offering “practical policy options” in bioethics.In the light of our experiences with the Council, we leave it with hopes that certain questions of national importance will be addressed. In light of the nature of federal advisory commissions, what is or are the proper roles of a national bioethics commission? If the aim is to provide advice and counsel to the President or, perhaps to the U. S. Congress, is that advice best rendered as a group consensus or as an in-depth exploration of the inevitably conflicting ethical perspectives on a given issue? How should such a commission be constituted—with what sorts of individuals? And what is the nature of the expertise that they individually and collectively bring to the commission’s functions? If the commission is to promote public debate and discussion, how exactly should it go about that task? And how is the efficacy of a commission to be assessed? Such questions inevitably lead us deep into contested territory, as the experience of this Council has shown: into the intersections of politics, religion, and science and into the relations between practice and theory—between policy and what some seem to deride as “philosophy.” Indeed, policy without an underlying philosophy is an edifice without a foundation; philosophy without policy is a foundation without an edifice.At the last meeting of the Council in March 2009, we launched a discussion of these questions with the... (shrink)

The President's Council on Bioethics has recently released a report supportive of the continued use of brain death as a criterion for human death. The Council's conclusions were based on a conception of life that stressed external work as the fundamental marker of organismic life. With respect to human life, it is spontaneous respiration in particular that indicates an ability to interact with the external environment, and so indicates the presence of life. Conversely, irreversible apnoea marks an (...) inability to carry out the necessary work of life, an inability which the Council considers an indicator of death. This conception has been conceived to circumvent criticisms of the previous model of loss of somatic integration, a model the Council admits that, in the presence of evidence of continuing functional integration in brain dead patients, was looking less than convincing. Nevertheless, by focusing on external work and ignoring the more essential work of integrative unity, the Council's conception of the nature of life is untenable, and of no assistance in supporting a relation of equivalence between the concepts of brain death and death. Consequently, the Council's conclusions do little to advance the definition of death debate, a potentially intractable debate that may necessitate the investigation of alternate ethical justifications for organ harvesting. (shrink)

The report of the President's Council on Bioethics, Human Cloning and Human Dignity, addresses the central ethical, political, and policy issue in human embryonic stem cell research: the moral status of extracorporeal human embryos. The Council members were in sharp disagreement on this issue and essentially failed to adequately engage and respectfully acknowledge each others' deepest moral concerns, despite their stated commitment to do so. This essay provides a detailed critique of the two extreme views on the (...) Council (i.e., embryos have full moral status or they have none at all) and then gives theoretical grounding for our judgment about the intermediate moral status of embryos. It also supplies an account of how to address profound moral disagreements in the public arena, especially by way of constructing a middle ground that deliberately pays sincere respect to the views of those with whom it has deep disagreements. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Incoherence of Determining Death by Neurological Criteria: A Commentary on Controversies in the Determination of Death, A White Paper by the President’s Council on Bioethics*Franklin G. Miller** (bio) and Robert D. Truog (bio)Traditionally the cessation of breathing and heart beat has marked the passage from life to death. Shortly after death was determined, the body became a cold corpse, suitable for burial or cremation. Two technological (...) changes in the second half of the twentieth century prompted calls for a new, or at least expanded, definition of death: the development of intensive care medicine, especially the use of mechanical ventilators, and the advent of successful transplantation of vital organs. Patients with profound neurological damage, leaving them incapable of breathing on their own and in an irreversible coma, could be maintained for some period of time with the aid of mechanical ventilation. The situation of these patients posed two ethical questions. Is it appropriate to stop life-sustaining treatment? If so, is it acceptable to retrieve vital organs for transplantation to save the lives of others before stopping treatment?In 1968, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proposed that death could be determined on the basis of neurological criteria, thus providing a positive answer to these two questions (Ad Hoc Committee 1968). According to the position of this committee, patients diagnosed with the cessation of brain function are dead, despite the fact that they breathe and circulate blood with the aid of mechanical ventilation. [End Page 185] Because they are dead, it is appropriate, indeed imperative, to stop mechanical ventilation. And because they are dead, it becomes ethical to procure vital organs for transplantation before stopping what otherwise would be life-sustaining treatment. Remarkably, this innovative neurological determination of death became, with little debate or controversy, the established position in medical ethics and the law throughout the United States.The Harvard Committee articulated the diagnosis of “irreversible coma,” but merely asserted that this condition constituted death. No explanatory rationale was provided. It fell to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research to provide an authoritative rationale in its 1981 report, Defining Death. The second paragraph of the report set the stage as follows: “The question addressed here is not inherently difficult or complicated. Simply, it is whether the law ought to recognize new means for establishing that the death of a human being has occurred” (President’s Commission 1981, p. 3). The Commission claimed that “death is a unitary phenomenon” (p. 7) and that the determination of death by neurological criteria, in terms of the absence of all brain function, is consistent with the traditional conception of death as the cessation of vital functioning of the organism as a whole. The key issue is the integrative functioning of the human organism, which ceases to exist, according to the Commission, when the whole brain, including higher cortical areas and the brain stem, fails to function. Although “brain-dead” patients do not appear to be dead—i.e., the reality of their death is “masked” by the activity of mechanical ventilation—the patient’s body has irreversibly lost all capacity for integrative functioning. In the words of the Commission: “When artificial means of support mask this loss of integration as measured by the old methods [cessation of respiration and heart beat], brain-oriented criteria and tests provide a new window on the same phenomenon” (p. 33). The President’s Commission was instrumental in developing and establishing “The Uniform Definition of Death Act”: “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead” (p. 2).Although the question posed by the President’s Commission was easy to articulate, the answer, over time, has proved complicated and controversial. The coherence and cogency of determining death by neurological criteria has been challenged. Various experts have demonstrated that “brain-dead” patients maintained on mechanical ventilation display a range of vital, integrative, functioning, which conflicts with the judgment that they are dead (Truog and... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Incoherence of Determining Death by Neurological Criteria: A Commentary on Controversies in the Determination of Death, A White Paper by the President’s Council on Bioethics*Franklin G. Miller** (bio) and Robert D. Truog (bio)Traditionally the cessation of breathing and heart beat has marked the passage from life to death. Shortly after death was determined, the body became a cold corpse, suitable for burial or cremation. Two technological (...) changes in the second half of the twentieth century prompted calls for a new, or at least expanded, definition of death: the development of intensive care medicine, especially the use of mechanical ventilators, and the advent of successful transplantation of vital organs. Patients with profound neurological damage, leaving them incapable of breathing on their own and in an irreversible coma, could be maintained for some period of time with the aid of mechanical ventilation. The situation of these patients posed two ethical questions. Is it appropriate to stop life-sustaining treatment? If so, is it acceptable to retrieve vital organs for transplantation to save the lives of others before stopping treatment?In 1968, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proposed that death could be determined on the basis of neurological criteria, thus providing a positive answer to these two questions (Ad Hoc Committee 1968). According to the position of this committee, patients diagnosed with the cessation of brain function are dead, despite the fact that they breathe and circulate blood with the aid of mechanical ventilation. [End Page 185] Because they are dead, it is appropriate, indeed imperative, to stop mechanical ventilation. And because they are dead, it becomes ethical to procure vital organs for transplantation before stopping what otherwise would be life-sustaining treatment. Remarkably, this innovative neurological determination of death became, with little debate or controversy, the established position in medical ethics and the law throughout the United States.The Harvard Committee articulated the diagnosis of “irreversible coma,” but merely asserted that this condition constituted death. No explanatory rationale was provided. It fell to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research to provide an authoritative rationale in its 1981 report, Defining Death. The second paragraph of the report set the stage as follows: “The question addressed here is not inherently difficult or complicated. Simply, it is whether the law ought to recognize new means for establishing that the death of a human being has occurred” (President’s Commission 1981, p. 3). The Commission claimed that “death is a unitary phenomenon” (p. 7) and that the determination of death by neurological criteria, in terms of the absence of all brain function, is consistent with the traditional conception of death as the cessation of vital functioning of the organism as a whole. The key issue is the integrative functioning of the human organism, which ceases to exist, according to the Commission, when the whole brain, including higher cortical areas and the brain stem, fails to function. Although “brain-dead” patients do not appear to be dead—i.e., the reality of their death is “masked” by the activity of mechanical ventilation—the patient’s body has irreversibly lost all capacity for integrative functioning. In the words of the Commission: “When artificial means of support mask this loss of integration as measured by the old methods [cessation of respiration and heart beat], brain-oriented criteria and tests provide a new window on the same phenomenon” (p. 33). The President’s Commission was instrumental in developing and establishing “The Uniform Definition of Death Act”: “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead” (p. 2).Although the question posed by the President’s Commission was easy to articulate, the answer, over time, has proved complicated and controversial. The coherence and cogency of determining death by neurological criteria has been challenged. Various experts have demonstrated that “brain-dead” patients maintained on mechanical ventilation display a range of vital, integrative, functioning, which conflicts with the judgment that they are dead (Truog and... (shrink)

Clinical ethics training programs are responsible for preparing their trainees to be competent ethics consultants worthy of the trust of patients, families, surrogates, and healthcare professionals. While the American Society for Bioethics and Humanities (ASBH) offers a certification examination for healthcare ethics consultants, no tools exist for the formal evaluation of ethics trainees to assess their progress toward competency. Medical specialties accredited by the Accreditation Council for Graduate Medical Education (ACGME) use milestones to report trainees’ progress along a (...) continuum of professional development as a means of “operationalizing and implementing” medical competencies. Utilizing the Core Competencies for Healthcare Ethics Consultation and the ACGME and American Board of Pediatrics’ (ABP) Pediatric Milestones Project, we developed milestones for 17 subcompetencies in clinical ethics consultation and academic bioethics. As the field of clinical ethics becomes more standardized, such tools will be needed to promote the development of robust training programs and to certify that their graduates are competent practitioners. (shrink)

McGovern, Kevin In December 2008, the US President's Council on Bioethics issued a White Paper titled 'Controversies in the Determination of Death.'1 Responding to contemporary critiques of the concept of brain death, the Council upholds the validity of this neurological standard for determining death. Significantly, it also proposes replacing the existing explanation of this standard with a new, very different rationale. As well, it argues that 'total brain failure' is a better name for this condition than 'brain (...) death.' This article summarises and then comments on this important statement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsF. Daniel Davis (bio) and Diane M. Gianelli (bio)As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1When the gavel change took place, (...) the Council's phone started ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring."Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is... (shrink)

Nonhuman primates represent an important reservoir for the transmission of new infectious diseases to humans. While several working groups and international agencies have grappled with the ethics of xenotransplantation, the Nuffield Council on Bioethics have recently published a comprehensive and far-reaching series of recommendations that, while not eliminating the infectious disease risks, have nonetheless detailed the major points for concern and have developed a rational approach to minimizing these risks. This report should serve as the blueprint from which (...) to proceed with xenotransplantation. (shrink)

Nonhuman primates represent an important reservoir for the transmission of new infectious diseases to humans. While several working groups and international agencies have grappled with the ethics of xenotransplantation, the Nuffield Council on Bioethics have recently published a comprehensive and far-reaching series of recommendations that, while not eliminating the infectious disease risks, have nonetheless detailed the major points for concern and have developed a rational approach to minimizing these risks. This report should serve as the blueprint from which (...) to proceed with xenotransplantation. Dr. Allan’s research focuses on simian retroviruses, including simian immunodeficiency viruses. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsDiane M. Gianelli (bio) and F. Daniel Davis (bio)Although the President's Council has moved into several new areas of interest during the past year, it also has devoted considerable effort to finalizing several upcoming reports and white papers. In early 2008, the Council will publish a collection of essays on human dignity and bioethics, a report on organ transplantation, (...) and a white paper on "brain death."The Council's report on organ transplantation—now near the end of the drafting and editing phases—has the public as its main audience and, as such, seeks to promote greater understanding of the ethical issues in organ procurement, allocation, and transplantation. The report situates these issues within the contexts of the history of transplantation, the clinical realities of this therapeutic modality, and the current policy framework of state and federal law and regulation.The Council is aware that other bodies—such as the Institute of Medicine—have, in recent years, produced excellent reports on transplantation. The Council's report, however, has a different focus. It explores such foundational issues as the meaning and experience of human embodiment, the philosophy of giving and receiving, and transplantation in relation to the ends and aims of medicine.The report also analyzes the ethics of deceased organ donation, living organ donation, organ allocation, and various proposals for increasing the supply of organs, with a focus on those that call for the replacement of the organ-as-gift philosophy with a market-oriented ethic of selling and buying.In another upcoming publication, the Council revisits the notion of "brain death." The Council did not plan to take on this issue when it began its organ transplantation project. But when researching material for that report, it became clear that—in recent years—some serious criticisms of the neurological standard for declaring death have arisen. Since the vast majority of organs procured from the dead come from "brain dead" patients—that is, those declared dead by the neurological standard—this presented an issue ripe for exploration.The last time a national bioethics body looked at the criteria for determining death was in 1981, when The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research issued "Defining Death," its seminal report that articulated and defended the neurological standard for declaring death. It also proposed a uniform statute for states to adopt based [End Page 397] on that standard. After its publication, states that had not already rewritten their laws to recognize the new neurological standard did so. The Council's white paper on the topic takes a new look at "brain death" in light of the recent evidence and arguments on both sides of the issue.In the Council's last report to the Kennedy Institute of Ethics Journal (December 2006), its upcoming volume on "Dignity" was described. Scholars from a variety of disciplines—and opinions—have written essays on "dignity and bioethics." The volume is ready to go to press.In addition to these documents, the Council, after devoting a number of sessions to the topic over the past couple of years, is considering publication of a white paper on newborn screening, with a probable focus on the benefits, harms, and burdens of mandated screening, and a look at the broader human significance of genetic information. The paper probably also will address the moral precepts that should guide such testing, as well as the precepts that should guide the acquisition and use of the genetic information gained through this process.Venturing into new territory this year, the Council heard from several speakers on "the healing professions" and "the ethical foundations of health care." Both of these topics are the subject of considerable attention and debate in the ethics literature. There is some concern, for example, that medicine and the other healing professions have lost—or are in danger of losing—their moral bearings. And in the controversies surrounding health care reform policies, what is at stake ethically often is obscured, confused, or lacking altogether.Under the rubric of "the professions," the Council heard various dimensions of the issue: the "crisis" in the ethics... (shrink)

The field of bioethics aims to ensure that modern scientific and technological advancements have been primarily developed for the benefits of humankind. This field is deeply rooted in the traditions of Western moral philosophy and socio-political theory. With respect to the view that the practice of bioethics in certain community should incorporate religious and cultural elements, this paper attempts to expound bioethical tradition of the Malay-Muslim community in Malaysia, with shedding light on the mechanism used by the National (...) Fatwa Council to evaluate whether an application of biological sciences is ethical or not. By using the application of the genetically modified food as a case study, this study has found that the council had reviewed the basic guidelines in the main references of shari'ah in order to make decision on the permissibility of the application. The fatwa is made after having consultation with the experts in science field. The council has taken all factors into consideration and given priority to the general aim of shari'ah which to serve the interests of mankind and to save them from harm. (shrink)

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)

ABSTRACT The role of the Catholic Church as conservative watchdog in the ‘culture wars’ of the 1970s and 1980s, with regards to issues of contraception, abortion and divorce, has perhaps obscured its more complicated stance on social issues. This article focuses on a significant shift in thinking with regards to the unacceptability of poverty and the role of the state in welfare provision in the 1960s and 1970s. It argues that in Ireland Catholic ideas, given a public platform by the (...) Second Vatican Council, had a significant impact on clerics and people, creating social justice agendas that could both influence government policy and inspire its critique. While obviously not solely responsible for the shift to the left that occurs in this period, this article highlights the significance of Catholic ideas in shaping attitudes to poverty and welfare in the Irish context. Reflecting on the longer history on the role of Catholic ideas in Irish society, this article concludes with the suggestion that the frequent alignment of the institutional Church and successive governments in many areas implies the need for further analysis of the influence of class interests in determining policy and shaping attitudes, interests which transcend the lens of church versus state. (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 July 2018, the Nuffield Council on Bioethics released the report Genome editing and human reproduction: Social and ethical issues, concluding that human germline modification of human embryos for implantation is not ‘morally unacceptable in itself’ and could be ethically permissible in certain circumstances once the risks of adverse outcomes have been assessed and the procedure appears ‘reasonably safe’. The Nuffield Council set forth two main principles governing anticipated uses and envisions applications that may include health enhancements (...) as a public health measure. This essay provides a critique of three aspects in the Nuffield Council’s Report: its presumption of therapeutic efficacy, its inflation of parental rights to create a certain type of child, and its reliance on a specially commissioned report that appears to distort key definitions in international law. (shrink)

This symposium discussed bioethics teaching, research and documentation and also research ethics committees. An international convention for the protection of the integrity of the human body was called for, as was a new European Committee on Ethics. 'The genetic impact' was a major preoccupation of the symposium.

In lieu of an abstract, here is a brief excerpt of the content:PEACE EDUCATION AND THE NORTHERN IRISH CONFLICT André Lascaris Dominican Theological Center, Nijmegen The Northern Irish conflict can be interpreted as an anachronism. This is true in many aspects. However, in the last ten years we were confronted with many "anachronistic" conflicts: in former Yugoslavia, in Rwanda, Algeria, Colombia, and Afghanistan, to mention only some. In our postmodern times the division of the world into two rather (...) neat halves with two centers of power has gone, the nation state is weakening and in many societies the social glue seems to be losing its cohesive force. We have to live together in pluralistic societies in which we are all a minority at times. Wars between states become less likely, butcivil wars are on the increase. Terrorism becomes a power against which the traditional armies and their weapons are quite useless in spite of many technological developments. The ancient laws concerningthe protection of women and children in wartime are becoming obsolete. Women are invited to get involved in the armed forces. The child soldier is a well-known phenomenon. In our western society a child's world, which exists in isolation from the adult world, is no longer a possibility. Some lessons learned in dealing with theNorthern Irish conflict might turn out to be worthwhile taking up in other situations. In this essay, I reflect with the help ofthe mimetic theory on peace work done by some Dutch people on behalfofNorthern Ireland between 1973 and 1992. The Northern Irish conflict as such is not the subject ofthis paper; the mimetic interpretation of this conflict was admirably covered by people such as Duncan Morrow and the late Frank Wright to which I refer the reader in my bibliography. I will concentrate on the educational aspects ofDutch peace work done in the Northern Irish context. Here it suffices to say that the 136André Lascaris Northern Irish conflict is not a religious one, though religious labels are being used. It is aconflict between two cultures, an Irish one and an AngloSaxon or British one. I. Dutch peace work on behalf ofNorthern Ireland A. A short history In 1973 I was invited to become a member of staff of a conference for influential Northern Irishmen in the Netherlands. Glenn Williams, then secretary general of the KEK (Conference of European Churches) had asked the Dutch Council ofChurches whether it could do something on behalf of Northern Ireland. After some consultation Williams asked the Dutch adult education center 'De Haaf to accommodate "mixed Roman Catholic and Protestant Irish groups in a quiet and spiritual atmosphere." The director of this center, Aat van Rhijn, a Presbyterian minister, asked me to participate in the conference because he wanted a Catholic priest to make the Roman Catholic Northern Irishmen feel represented on the staff. A laywoman, Hermine Keuning, was the third member of the staff. The Dutch Reformed Church provided money. In April 1973 a visit was made to Belfast and contact was established with the Irish Council ofChurches; it soon became our Northern Irish counterpart. In Septembera firstconference was held, quickly followed by a second one. From participants of the first conference a new request for a conference was made and after this one even more conferences were organized, altogether 18 between 1973 and 1983. We worked with neighborhood groups, politicians, paramilitaries, social workers, police officers, adult educators, social workers, journalists and editors, Catholic and Protestant clergymen. In the conferences ofthe protestant politicians and the clergy it was not possible to have a mixed group; we had to be content with having some either Catholic or Protestant "observers" at the conference. Inthe late seventiesthesecurity situation inNorthern Ireland improved. The necessity oftraveling to the Netherlands to have a conference became less evident. Because our work remained in demand, we organized weekends in Northern Ireland itself from 1981 onwards, mainly in Corrymeela, an ecumenical adult education center near Ballycastle. Money was coming from several sources, but mainly from the Dutch Reformed Church. To handle the money well we decided in 1975 to become a trust: the "Dutch Northern Irish Advisory Committee." It was typical ofthis trustthat its constitution stipulated that no conference or any Peace Education andthe Northern Irish Conflict137 other activity... (shrink)

In 2006, the Indian Council of Medical Research (ICMR) published its ‘Ethical guidelines for Biomedical Research on human participants’. The intention was to translate international ethical standards into locally and culturally appropriate norms and values to help biomedical researchers in India to conduct ethical research and thereby safeguard the interest of human subjects. Unfortunately, it is apparent that the guideline is not fit for purpose. In addition to problems with the structure and clarity of the guidelines, there are several (...) serious omissions and contradictions in the recommendations. In this paper, we take a close look at the two key chapters and highlight some of the striking flaws in this important document. We conclude that ethics committees and national authorities should not lose sight of international ethical standards while incorporating local reality and cultural and social values, as focusing too much on the local context could compromise the safety of human subjects in biomedical research, particularly in India. (shrink)

The President’s Council on Bioethics has addressed the moral status of human preembryos in its reports on stem cell research and human therapeutic cloning. Although the Council has been criticized for being hand-picked to favor the right-to-life viewpoint concerning human preembryos, it has embraced the idea that the right-to-life position should be defended in secular terms. This is an important feature of the Council’s work, and it demonstrates a recognition of the need for genuine engagement between (...) opposing sides in the debate over stem cell research. To promote this engagement, the Council has stated in secular terms several arguments for the personhood of human preembryos. This essay presents and critiques those arguments, and it concludes that they are unsuccessful. If the best arguments in support of the personhood of human preembryos have been presented by the Council, then there are no reasonable secular arguments in support of that view. (shrink)

The Irish Teaching Council introduced a new model of school-based and National Induction Programme for Teachers (NIPT) called Droichead (meaning ‘bridge’ in Gaelic) in 2013/14. The Droichead process is an integrated professional induction framework for newly qualified teachers. It was designed to provide whole-school support for teacher induction in both primary and post-primary schools. This study explores the implementation of Droichead in a post-primary school, and to gain insights as to its effectiveness and the potential to bring about (...) improvements. The study found that NQTs are un-prepared to assume full teaching duties after initial teacher education (ITE), and can benefit greatly from having mentors from within the school to guide them through their first year of teaching. The benefits of the process include emotional support for NQTs, practical help in terms of learning new teaching strategies, the promotion of reflective practice and assisting the professional development of teachers. Droichead was found to promote peer observation and can help leaders change the culture of an organisation to better embrace and support peer observation and review. The programme also promoted and developed leadership skills among the mentors, who cited a renewed enthusiasm for teaching from their involvement in Droichead. There were conflicting views on the involvement of the senior leadership team in the programme, and it would seem that the success of their inclusion depends largely on the individual style of leadership. The negative aspects of the Droichead process related to the ‘Cluster meetings’ which are compulsory for NQTs and were seen as being too similar to their initial teacher education. (shrink)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality (...) of values and interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

The article discusses ways of developing bioethical guidance in the Orthodox Christian discourse. Here, “ethical” refers to what contributes to holiness, “un-ethical” refers to sin as what hinders man’s foundational calling to holiness. To explore the development of guidance for emerging bioethical issues, we use the “therapeutic” understanding of treatment for sin in two senses. (1) It refers to the spiritual means provided by the “hospital” of the Orthodox Church for healing the fallenness of human nature in general; and (2) (...) it helps identify in particular cases both what counts as transgression of unconditional boundaries (defining what is illicit for everyone) and what is advisable in order to help particular persons to choose rightly within the area of the “more or less licit” (or “permissible”). Sources of the Orthodox faith that frame the general understanding of the boundaries between the permissible and the impermissible reflect the work of the Holy Spirit in the Church framing her Sacred (Holy) Tradition. In Holy Tradition, prayers, as communion with God, occupy a central position. This is why Orthodox moral reasoning, and thus also Orthodox bioethics, takes the form of liturgical bioethics. Penalties of excommunication determine hard boundaries that believers should not overstep: when crossing such boundaries, they enter on a spiritually dangerous path that completely distracts them away from God. Many minor sins, by contrast, have not been codified in Canons. They are not taken to remove the sinner completely from contact with the Lord. Within this realm of actions, it depends on a person’s spiritual maturity whether such actions are classified as sinful. Thus, an act can be counted merely as a small offense if committed by a beginner, while that same act can become a grave sin for an advanced believer. Due to acceleration of the technological progress, Orthodox recourse to Holy Tradition encounters ever-new challenges. There are bioethical issues that had not surfaced at the time of the Fathers of the Church. Today, Bishops gathered at a local council can supply the guidance lacking on a newly emerging bioethical problem. Even if ratified only by such local councils, the resulting decrees can also be regarded as the expression of the Holy Spirit working within a local Church and conveying His guidance. The article illustrates this source of Christian bioethics by reference to how the Russian Orthodox Church orients and develops its position on the ethics of reproductive technologies. (shrink)

ABC20 will be held at Dhaka, Bangladesh, in cooperation with Social Science Research Council, Bangladesh, Planning Division, Ministry of Planning; Directorate General of Health Services (DGHS), Ministry of Health & Family Welfare; Bangladesh Medical Research Council (BMRC); Asian Bioethics Association (ABA) and Eubios Ethics Institute, Thailand, New Zeeland and Japan. It provides opportunity for all scholars around the world to gather feedback on their research, maximize networking opportunities, and learn the latest information and methodologies on bioethics. (...) The previous conferences have been held in China, Japan, Korea, Turkey, Thailand, Malaysia, Indonesia, India, Iran, the Philippines and Taiwan. The conference will bring together scholars and policy makers from many disciplines all around the world (beyond the Asia and the Pacific) to discuss and deliberate the latest ethical issues in biomedicine, biotechnology, science, social science and education for dilammas facing today for humanity. (shrink)

This paper is focused on the analysis of two documents (the Council of Europe's Bioethics Convention and the Additional Cloning Protocol) inasmuch as they refer to the relationship between human dignity and human genetic engineering. After presenting the stipulations of the abovementioned documents, I will review various proposed meanings of human dignity and will try to identify which of these seem to be at the core of their underlying assumptions. Is the concept of dignity proposed in the two (...) documents coherent? Is it morally legitimate? Is it, as some might assume, of Kantian origin? Does it have any philosophical roots? (shrink)

The following article analyzes the process of conception, elaboration, and adoption of the Universal Declaration of Bioethics and Human Rights, and reflects on the lessons it might hold for public bioethics on the international level. The author was involved in the process at a variety of levels: he provided advice to the IBC on behalf of the President's Council of Bioethics; he served as the U.S. representative to UNESCO's Intergovernmental Bioethics Committee; and led the U.S. (...) Delegation in the multilateral negotiation of Government experts that culminated in the adoption of the declaration in its final form. The author is currently serving a 4-year term as a member of UNESCO's International Bioethics Committee. (shrink)

The Nuffield Council on Bioethics' recent report on the ethics of the donation of bodily material for treatment and research (Human Bodies: Donation for Medicine and Research. www.nuffieldbioethics.org/human-bodies) brings to the fore the much-debated question of how far society should go in trying to encourage people to donate their bodily material. Based on conclusions reached by the Working Party with respect to the duties of the stewardship state, the role of altruism and of solidarity, public interest in health-related (...) research, the welfare of the donor and the importance of ‘professional values’ such as trust and respect, the report presents an ‘Intervention Ladder’ that sets out the ethical acceptability of various ways of encouraging people to donate. Policy recommendations are made in a number of areas including organ donation, gamete donation, volunteering for clinical trials and the use of donated tissue in research. (shrink)

Since the 1980s, Islamic scholars and medical experts have used the tools of Islamic law to formulate ethico-legal opinions on brain death. These assessments have varied in their determinations and remain controversial. Some juridical councils such as the Organization of Islamic Conferences' Islamic Fiqh Academy (OIC-IFA) equate brain death with cardiopulmonary death, while others such as the Islamic Organization of Medical Sciences (IOMS) analogize brain death to an intermediate state between life and death. Still other councils have repudiated the notion (...) entirely. Similarly, the ethico-legal assessments are not uniform in their acceptance of brain-stem or whole-brain criteria for death, and consequently their conceptualizations of, brain death. Within the medical literature, and in the statements of Muslim medical professional societies, brain death has been viewed as sanctioned by Islamic law with experts citing the aforementioned rulings. Furthermore, health policies around organ transplantation and end-of-life care within the Muslim world have been crafted with consideration of these representative religious determinations made by transnational, legally-inclusive, and multidisciplinary councils. The determinations of these councils also have bearing upon Muslim clinicians and patients who encounter the challenges of brain death at the bedside. For those searching for ‘Islamically-sanctioned’ responses that can inform their practice, both the OIC-IFA and IOMS verdicts have palpable gaps in their assessments and remain clinically ambiguous. In this paper we analyze these verdicts from the perspective of applied Islamic bioethics and raise several questions that, if answered by future juridical councils, will better meet the needs of clinicians and bioethicists. (shrink)

This article focuses on two possible missions for a national bioethics commission. The first is handling differences of worldview, political orientation, and discipline. Recent work in political philosophy emphasizes regard for the dignity of difference manifested in "conversation" that seeks understanding rather than agreement. The President's Council on Bioethics gets a mixed review in this area. The second is experimenting with prophetic bioethics. "Prophetic bioethics" is a term coined by Daniel Callahan to describe an alternative (...) to compromise-seeking "regulatory bioethics." It involves a critique of modern medicine. In the contemporary context, the areas of biotechnology and access to health care cry out for prophetic attention. The Council has addressed biotechnology; unfortunately, that experience suggests that the kind of prophecy that it practices poses risks to conversation. With regard to access issues, the article proposes an effort that unites themes of human dignity, solidarity, and limits in support of reform, while highlighting, rather than papering over, differences. (shrink)

This paper, which is based on an extensive analysis of the literature, gives a brief overview of the main ways in which solidarity has been employed in bioethical writings in the last two decades. As the vagueness of the term has been one of the main targets of critique, we propose a new approach to defining solidarity, identifying it primarily as a practice enacted at the interpersonal, communal, and contractual/legal levels. Our three-tier model of solidarity can also help to explain (...) the way in which crises of solidarity can occur, notably when formal solidaristic arrangements continue to exist despite ‘lower tiers’ of solidarity practices at inter-personal and communal levels having ‘broken away’. We hope that this contribution to the growing debate on the potential for the value of solidarity to help tackle issues in bioethics and beyond, will stimulate further discussion involving both conceptual and empirically informed perspectives. (shrink)

This article considers the sort of diversity in perspective appropriate for a presidential commission on bioethics, and by implication, high-level governmental commissions on ethics more generally. It takes as its point of comparison the respective reports on human cloning produced by the National Bioethics Advisory Commission, appointed by President Bill Clinton, and George W. Bush's President's Council on Bioethics, under the leadership of its original chair, Leon Kass. I argue that the Clinton Commission Report exemplifies forensic (...) diversity (the type of diversity between contesting parties in a legal case), while the Kass Council Report exemplifies academic diversity (the diversity found in a medieval disputatio). Drawing upon Thomas Aquinas, I argue that the type of diversity most appropriate for such advisory bodies is deliberative diversity, which facilitates the President's process of taking counsel. After considering their respective charges, I suggest that neither the Clinton Commission nor the Kass Council possessed an adequate degree of deliberative diversity for their respective tasks. (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)

Drawing on an analysis of complaint files that we conducted for the Irish Medical Council, this paper offers three possible explanations for the gap between the ubiquity of official commitments to taking patients’ complaints seriously and medical professional regulators’ dismissal—as not warranting an inquiry—of the vast majority of complaints submitted by members of the public. One explanation points to the “regulatory illiteracy” of many complainants, where the remit and threshold of seriousness of regulators is poorly understood by the (...) general public. Another points to possible processes of “institutional epistemic injustice” that unjustly undermine the credibility of certain complainants, such as those with low levels of formal education. A third explanation highlights the marginalization of the general public from “symbolic power” to define what matters in medical professional regulation. The paper is offered in a spirit of ideas in progress and raising questions rather than definitive insights into the regulatory process. (shrink)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality (...) of values and interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

: For many reasons, and more than its predecessors, the President's Council on Bioethics has been the subject of much public attention and heated controversy. But little of that attention and controversy has been informed by knowledge of the Council's mission, its ways of working, and, most importantly, its actual work. This essay describes the Council's mission, discusses its public ways of working, and reviews the five major works produced during the Council's first term. In (...) all its activities, the Council has sought to develop a richer bioethics, one that recognizes and tries to do justice to the deep issues of our humanity raised by the age of biotechnology. Believing that these issues are properly matters to be discussed and governed by the polity as a whole, the Council also has sought to contribute to a genuinely public or political bioethics, beyond the rule of "experts," scientific and bioethical. (shrink)

Comparative assessments of national bioethics commissions in the United States commonly look at the differences among these groups over their forty‐year history. A particular focus has been differences in the membership, mission, methods, and reports of the President's Council on Bioethics, which was active from 2001 until 2009, compared to those of its predecessors and the recent Presidential Commission for the Study of Bioethical Issues, active from 2009 until 2016. The differences are real, but disproportionate attention to (...) them can obscure the substantial similarities in commissions’ structure and function throughout the history of expert bioethics advice to government. As the Trump administration considers what role, if any, a bioethics commission will play in its work, it would be well served to consider how choices regarding the design of such a group and the topics it examines can best facilitate the unique contributions it can make to the government and to the country. (shrink)

Anti-aging medicine has emerged in the past two decades as both a medical practice and scientific objective largely aimed at intervening into the process of aging itself rather than its “associated” diseases. This has provoked a both excitement and concern in bioethical deliberations on the meaning and potential impact of an effective intervention. In this article, I examine the different ways in which bioethicists, other social scientists, and anti-aging proponents frame anti-aging goals, in particular, the construction of immortality as its (...) implicit and explicit aim. This research is based upon over 9 years of anthropological, ethnographic interview- and observation-based research in the field and draws substantially from the US President’s Council on Bioethics’ deliberations on this topic as well as from interview data and other publications/discussion on anti-aging medicine. I argue that while the framework of life and death provide the primary structure for many bioethical and social science critiques of anti-aging medicine, many if not most anti-aging practitioners, researchers, and advocates employ the alternative structure of health and pain to orient their work. These divergent orientations of life/death and health/pain beget competing conversations around anti-aging medicine; including voices from the front lines of anti-aging practice complicate bioethical critiques and ultimately beg different questions. Positioning the painful, physiological decline of aging as the ultimate adversary rather than death challenges traditional models of biomedical intervention based on “nature” and “disease” constructions. (shrink)