Bioethics commissions have been critiqued on the basis that they are not sufficiently public or are too reliant upon expertise to have legitimacy or authority in regard to public policy debates. Adequately assessing the legitimacy and authority of commissions requires thinking clearly about the "publics" these commissions serve, the primary tasks of public bioethics, and how those tasks might be performed with a certain kind of ethical expertise and limited authority that makes (...) them legitimate players in public policy debates concerning bioethics. (shrink)

: Bioethics commissions have been critiqued on the basis that they are not sufficiently public or are too reliant upon expertise to have legitimacy or authority in regard to public policy debates. Adequately assessing the legitimacy and authority of commissions requires thinking clearly about the "publics" these commissions serve, the primary tasks of public bioethics, and how those tasks might be performed with a certain kind of ethical expertise and limited authority that (...) makes them legitimate players in public policy debates concerning bioethics. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 20 Heft: 1 Seiten: 289-292.

: National bioethics commissions have been critiqued for a variety of structural, procedural, and political aspects of their work. A more recent critique published by Dzur and Levin uses political philosophy to constructively critique the work of national bioethics commissions as public deliberative forums. However, this public forum critique of bioethics commissions ignores empirical research in political science and normative claims that suggest that advisory commissions can and should have diverse of (...) functions beyond that of being public forums. The present paper argues that the public forum critique too narrowly considers the roles that bioethics commissions can play in public bioethics and ignores the moral obligation of commissions to fulfill their mandates. Evaluations of commissions must consider that these institutions can serve in capacities other than those of a public deliberative forum and use additional measures to evaluate the multiple roles and successes of bioethics commissions in public policy. (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)

: As the fifth national bioethics commission has concluded its work and a sixth is currently underway, it is time to step back and consider appropriate measures of success. This paper argues that standard measures of commissions' influence fail to fully assess their role as public forums. From the perspective of democratic theory, a critical dimension of this role is public engagement: the ability of a commission to address the concerns of the general public, to (...) learn how average citizens resolve moral issues in healthcare, and to monitor public opinion on the topics addressed in the commission. Such a public forum role is supported by the critical literature within bioethics, which has deemed some commissions successful, supported more generally by the history of bioethics as a reform discourse that has brought socially important values into the medical domain, and supported more generally still by the example of the great social issues commissions of the 1960s. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Another Bioethics Commission?Renie Schapiro (bio)Ever Since the Ill-Fated Biomedical Ethics Advisory Committee (BEAC) ended almost before it began a few years ago, bioethicists and the members of Congress who take an interest in them have wondered whether a governmental commission is still a feasible way to address bioethics issues.The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in the 1970s, and the (...) President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in the early 1980s, have generally received high marks for their work. But since the expiration of the President's Commission in 1983, no federal body has been able to sustain the momentum.Tempers around the abortion issue couldn't be tamed enough even to elect a board chairman for the BEAC, or for the body to begin studying the issues. From its inception, abortion politics threatened to dog its work.Both the National Commission and the President's Commission studied issues touching on the abortion question. The President's Commission reported on genetic screening. The National Commission looked at fetal research. Both were able to produce respected reports that largely steered clear of the abortion acrimony.But that was then. The question facing policy makers inside the Beltway is how we can learn from the past experiences to make some new body work now. The question extends far beyond the abortion issue, of course.When certain people in Washington start asking questions, the answer usually comes by way of a study. Sometimes, as in this case, more than one study.In the March 1992 issue, this Journal reported on an Institute of Medicine study on ethics commissions. That study is still underway. It is scheduled to be completed in January 1994.More recently, the Office of Technology Assessment (OTA), an arm of Congress, also took on the issue. The OTA project is intended to be a quicker, more confined study. It began last fall and a final report is expected later this month.The primary force behind the OTA study is Senator Mark Hatfield. In a September 8, 1992 letter, co-signed by Senators Edward Kennedy and Dennis DeConcini, he asked OTA to prepare a background report to assist Congress in [End Page 77] "determining what is the best approach to explaining policy problems with biomedical and ethical dimensions."The letter noted: "As the 21st Century approaches, Congress will face policy dilemmas for which an informed decision can only be made through understanding not just the legal or economic dimensions of the questions, but the ethical considerations as well."Hatfield's interest in bioethics issues over the past few years has centered largely on biotechnology, and particularly patent rights. He had planned to introduce legislation to put a moratorium on patenting of genetically altered organisms, which according to Hatfield staffer Douglas Pahl caused a "firestorm" in the biotechnology community.As a result, Kennedy and DeConcini said they would hold hearings on the issue if Hatfield would withdraw the amendment. The three agreed to request a short-term OTA report on possible governmental structures for dealing with bioethics issues and a longer report looking at patenting issues.In their letter, the three senators asked OTA to prepare a history of bioethics in public policy. Referring specifically to the past commissions, they asked, "What lessons can we learn from each of these—or similar—entities? What worked, or did not work, and why?" The request also asked OTA to examine international institutions.In response to the request, OTA held a workshop entitled "Biomedical Ethics in U.S. Public Policy" on December 4, 1992. It brought together 15 people who had participated in commissions—from local to international—as well as observers of these bodies and health professionals who used their products.1According to project director Robyn Nishimi, the workshop was meant to be a free-wheeling discussion. Although there was no total consensus, the focus of the discussion tended to be on how to make a commission function effectively, rather than on whether there should be one. That workshop will be part of a report of about 40-60 pages OTA hopes to... (shrink)

: National bioethics commissions have struggled to develop ethically warranted methods for conducting their deliberations. The National Bioethics Advisory Commission in its report on stem cell research adopted an approach to public deliberation indebted to Rawls in that it sought common ground consistent with shared values and beliefs at the foundation of a well-ordered democracy. In contrast, although the research cloning and stem cell research reports of the President's Council on Bioethics reveal that it broached (...) two different methods of public deliberation—balancing goods and following an overarching moral principle—it adopted neither. Thereupon its prime mover, Leon Kass, influenced particularly by the approach of Leo Strauss, sought to develop a method of public deliberation guided by tradition and practical wisdom. When this failed, the Council fell back on a method that took account of shared fundamental values of a free democracy—a method remarkably akin to that employed by the National Bioethics Advisory Commission. Respect for diverse reasonable conceptions of the good in a democratic polity requires national bioethics commissions to seek and incorporate that which is valuable in opposing positions. (shrink)

The National Bioethics Advisory Commission, of which I was a member, was established by a 1995 executive order that identified its “first priority” as “the protection of the rights and welfare of human research subjects.” Not surprisingly, then, most of NBAC's work focused on research involving human subjects or participants. A second priority concerned “issues in the management and use of genetics information, including but not limited to, human gene patenting.” NBAC's charter (in contrast to the executive order) listed (...) this charge as “part B” of the “first priority.” Nonetheless, NBAC never fully developed it. In addition to responding to requests and recommendations from the National Science and Technology Council, NBAC could accept suggestions from Congress and the public for bioethical issues it should consider, and it could also identify other issues to consider and set priorities among them. From its first meeting on October 4, 1996, until its charter expired on October 3, 2001, NBAC produced six reports, with 120 recommendations. In this essay, I make a few observations about principles and moral reasoning in NBAC's deliberations and about NBAC's attention to religious beliefs in the context of two bioethical controversies, provide a rough evaluation of NBAC's impact, and consider three possible models for future public bioethics directed at federal public policy. (shrink)

: In a 2004 article, we argued that bioethics commissions should be assessed in terms of their usefulness as public forums. A 2006 article by Summer Johnson argued that our perspective was not supported by the existing literature on presidential commissions, which had not previously identified commissions as public forums and that we did not properly account for the political functions of commissions as instruments of presidential power. Johnson also argued that there was (...) nothing sufficiently unique about bioethics commissions to make the public forum perspective particularly applicable. We respond by arguing that analysis of commissions' work as public forums fits well within the literature on commissions, especially on their agenda-setting functions, and that the political functions of commissions are often compatible with their functioning as public forums. We also demonstrate how the origins and concerns of bioethics make public forum analysis particularly applicable to bioethics commissions. (shrink)

Focusing on the work of one bioethics commission, the New York State Task Force on Life and the Law, this article explores the role played by moral consensus in public ethics. Task Force members, who were appointed to represent diverse interests in New York State, identified a culturally strong value of individual autonomy as the ethical basis for their work on life-sustaining treatment. This moral consensus permitted the members to unite across their differences and develop public policy (...) recommendations that substantially reformed a highly troubling New York law. However, the principle of autonomy insufficiently guides decisions by caring family members for incompetent adults in cases where little is known of patient preference. A different, more innovative moral vision is required – one that grants a more robust moral authority to the family. While government efforts that rely on moral consensus developed in a broadbased and well-reasoned manner can serve us well, in some cases the consensus will provide inadequate moral guidance. Government bioethical efforts must guard against the limits of moral vision in light of their disproportionate societal power. Keywords: autonomy, consensus, family decisionmaking, government bioethics, incompetent patients, life-sustaining treatment, surrogate decisionmaking CiteULike Connotea Del.icio.us What's this? (shrink)

The establishment of Mexico's National Bioethics Commission (Comisión Nacional de Bioética), in 1992, was conceived within the context of a global movement aimed at raising awareness of the ethical implications of technological and scientific development, especially in biomedicine. In 2005, a new decree put the commission under the scope of the Secretariat of Health and granted it technical and operational autonomy, allowing it to become a regulatory agency aimed at promoting a culture of bioethics, encouraging reflection on human (...) health, and developing guidelines for health care, research, and education, through a global, secular, and democratic perspective. The commission became the leading actor in the strategy for institutionalizing bioethics in Mexico after reforms to the country's General Health Act in 2011, which required that public, social assistance, or private health care facilities establish a hospital bioethics committee to address bioethical dilemmas or issues and, when relevant, a research ethics committee to address research with human subjects. This assignment has shifted the focus of the activities and goals of the National Bioethics Commission toward establishing these committees in line with current regulations and developing mechanisms to ensure that they operate with the highest standards of ethical conduct, performance, and accountability. (shrink)

Shortly after the Presidential Commission for the Study of Bioethical Issues was constituted in 2010 and days before the commission members were to join a conference call to discuss possible topics for their deliberation, Craig Venter held a press conference announcing that his lab had created a synthetic chromosome for a species of mycoplasma and had inserted this genetic material into organisms of another species of mycoplasma (the genes of which had been deactivated), transforming the host species into the donor (...) species. While not overtly claiming to have “created life in the test tube,” Venter's publicity seemed cleverly designed to provoke the media into reporting his discovery in just that way. The resulting uproar caused President Obama to give his new bioethics commission the assignment of investigating the ethics of the emerging field of synthetic biology. The commission went right to work. It formed working groups to deliberate about parts of the report, feeding ideas and language to the staff members who would do the actual writing, and then present the working group suggestions to the commission as a whole for public deliberation at open meetings. One of those working groups was charged with coming up with ethical principles that would guide the analysis. Having served as a member of that working group, I report here on the process by which these principles emerged and reflect upon the suitability of that process for the work of public bioethics commissions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:In the Belly of the Whale:Some Thoughts on Preserving the Integrity of the New Bioethics CommissionF. Daniel Davis (bio)10 July 2010. Washington, D.C. President Obama's Presidential Commission for the Study of Bioethical Issues has just concluded its inaugural meeting, designed as a primer—the first of three that it plans to hold—on synthetic biology. As a topic for deliberation by a national bioethics commission, "synbio" is ideal. A (...) cloud of equipoise hangs over the practical implications of recent developments in this, the latest phase in the evolution of biotechnology—a seemingly genuine uncertainty about the need for additional mechanisms of oversight to mitigate potential risks to biosafety or biosecurity. Despite these concerns, its advocates and practitioners enthusiastically champion the prospect of eventual, perhaps significant benefits to be gained with progress in "synbio," including, for example, enhanced processes for the mass production of vaccines and biofuels. And yet like the advent of recombinant DNA technologies in the mid-1970s, synthetic biology has generated not only hope for benefits and concern for risks, but also questions variously described as "deep," "profound," "fundamental," and "philosophical": Is the capacity to synthesize novel, living entities yet another technological invitation to hubris on the part of humankind? Will that capacity alter the relationship between humankind and nature? How should we think about the moral status of living entities created de novo in the laboratory? Should we even care? How will wide-scale applications of synthetic biology tip the scales of social justice? And finally, the democratization of synthetic biology, the growth of DIY-BIO (do-it-yourself-biology) communities beyond the usual scientific arenas of academia and industry, has infused old questions about scientific freedom and responsibility with new complexities—all in the midst of an American public that is reportedly unaware and uneducated about this new chapter in the often triumphant, unsettling history of biotechnology.Thus, the topic of synthetic biology presents the new commission with several possibilities. It could very well make a substantial contribution to public policies responsive to both the current capabilities and the possible trajectories of [End Page 291] these emergent biotechnologies. The very fact that the President explicitly asked the Commission to take up the topic and report back to him (in six months) means that that potential is especially promising. It could, as well, delve into the "deeper" philosophical questions that "synbio" raises with the aim of bringing both depth and breadth to the tasks of critically analyzing and reflecting upon what currently is known and what, with regard to the future, can only be glimpsed of this amalgam of the life sciences, engineering, and other disciplines. The Commission could also set its sights on diminishing the apparent deficit in public understanding of these biotechnologies. And finally, with this topic as well as any others it takes up, the Commission, along with the administration that established it, could make an effort to reinvigorate public bioethics in the United States. At the very least, in the sobering light of experience with the President's Council on Bioethics, certain actions or behaviors could be avoided in the interests of preserving the integrity—the moral and political legitimacy—of the new commission. Although each of these possibilities warrants further explanation, my focus here is the final one.The Belly of the WhaleIn several decades, some future historian of public bioethics in the U.S. will be able to look back on the bioethics commissions established to date and offer an insightful, comprehensive—maybe even magisterial—account of their beginnings and endings, their deliberations and the political forces that shaped them, and perhaps most important, their ultimate value as public bodies. Lacking the strategic perch of historical distance, and fresh from the trenches, I can only offer a few somewhat informed but partial observations and arguments about public bioethics in the context of contemporary American politics, acknowledging at the outset that my thoughts are open to, and needful of, critical amendment or supplement by others.In the U.S., bioethics commissions are political creatures, established through the authority of the Congress or the President for the purpose of providing counsel to the legislative and/or executive... (shrink)

In this essay, I offer some reflections on how the topics were identified and approached by the Presidential Commission for the Study of Bioethical Issues, on which I had the honor to serve, in the hope that the reflections may be useful to future national bioethics commissions. In the executive order that established the bioethics commission, President Obama explicitly recognized the ethical imperative to responsibly pursue science, innovation, and advances in biomedical research and health care, and the (...) importance of national attention to these issues. The bioethics commission prioritized practicable, actionable, targeted recommendations. Like most earlier U.S. national bioethics commissions, President Obama's commission did not undertake projects on significant and troublesome issues related to health and health care that were not associated with new science or technology. Issues such as health care access, health care delivery, opioid addiction, end‐of‐life care, and physician‐aid‐in‐dying are topical and ethically complex areas of significance to bioethics, and they are also being discussed and debated by the public, the media, and policy‐makers. In my view, there are good reasons to select and prioritize projects as well as a justification for confining commission efforts to issues related to novel science and emerging technologies, when there is only one national‐level bioethics commission that has been established by the Office of the President. (shrink)

The intense media coverage of the latest version of “human cloning” that began in mid‐October with a front‐page story in the New York Times revealed more than the public's deep fascination with the prospect of endless human replicas.1 It also served as a reminder that for the past decade no official, broad‐based advisory bioethics body has operated in the United States.

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

Flesh of My Flesh is a collection of articles by today's most respected scientists, philosophers, bioethicists, theologians, and law professors about whether we should allow human cloning. It includes historical pieces to provide background for the current debate. Religious, philosophical, and legal points of view are all represented.

I could tell many war stories about my experience serving on the President's Council on Bioethics—one of the most controversial national bioethics commissions so far—but I want to focus instead on how the experience influenced my views on bioethics, politics, and the potential contributions of national commissions. The executive order that established the Council directed it to consider policy questions, but it spoke primarily of providing a forum for national discussion, inquiry, and education. In this (...) sense, the Council's mission departed from that of other national bioethics commissions, which have had more direct policy functions. Most bioethics commissions consider a range of ethical positions in their reports, but their primary objective has been to develop consensus recommendations on whatever topic they are addressing. The Council's executive order moved away from the consensus‐based policy model and called for deep attention to contested ideas. Although the search for consensus may be the most suitable approach for policy activities, it can lead to a bland and anemic version of bioethics. The Council sought to contribute thick bioethical analysis. (shrink)

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

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer (...) moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (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)

The term “globalization” was popularized by Marshall McLuhan in War and Peace in the Global Village. In the book, McLuhan described how the global media shaped current events surrounding the Vietnam War [1] and also predicted how modern information and communication technologies would accelerate world progress through trade and knowledge development. Globalization now refers to a broad range of issues regarding the movement of goods and services through trade liberalization, and the movement of people through migration. Much has also been (...) written on the global effects of environmental degradation, population growth, and economic disparities. In addition, the pace of scientific development has accelerated, with both negative and positive implications for global health. Concerns for national health transcend borders, with a need for shared human security and an enhanced role for international cooperation and development [2]. These issues have significant bioethical implications, and thus a renewed academic focus on the ethical dimensions of public health is needed. Future developments in science and health policy also require a firm grounding in bioethical principles. These core principles include beneficence; nonmaleficence ; respect for persons and human dignity ; and attention to equity and social justice. According to the World Health Organization [3], global ethical approaches should monitor and update ethical norms for research, as necessary; anticipate ethical implications of advances in science and technology for health; apply internationally accepted codes of ethics; ensure that agreed standards guide future work on the human genome; and ensure that quality in health systems and services is assessed and promoted. (shrink)

We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

Metaphors used to describe new technologies mediate public understanding of the innovations. Analyzing the linguistic, rhetorical, and affective aspects of these metaphors opens the range of issues available for bioethical scrutiny and increases public accountability. This article shows how such a multidisciplinary approach can be useful by looking at a set of texts about one issue, the use of a newly developed technique for genetic modification, CRISPRcas9.

Ethics advisory groups, in various forms, have existed for at least 50 years in the United States and other countries. In science and biomedicine, four principal types of committees can be distinguished: policy-making and/or advisory committees, health professional association committees, health care ethics committees, and research ethics committees. Overall, these bodies have been of use to governments, policy makers, health care professionals, and the public in considering ‘what is ethical’ and ‘what is unethical’ in areas such as research involving (...) humans or animals or environmental questions such as whether to use genetically modified crops. This paper concentrates on a particular and... (shrink)

I greatly appreciate the open peer commentary authors’ thoughtful engagement with my proposal to include a Citizens’ Jury (CJ) at the level of the International Commission when exploring ethical re...

This paper examines the drive for consensus from the perspective of the good government framework for federal advisory commissions in the United States. Specifically, the paper examines the Federal Advisory Committee Act (FACA) – the statute, its regulations, and case law. It shows that the FACA was intended to be an antidote to abuses in consensus‐making processes, including the failure to fully include competing views on commissions. The index of suspicion in the FACA scheme rises when a group (...) work product – including a consensus report – is to be the basis of recommendations to federal officials. Once FACA's requirements regarding committee composition are satisfied, the index of suspicion drops and FACA is indifferent to consensus‐making; but the conditions for informed, meaningful participation apply to members who dissent from, as well as those who participate in, consensus. In negotiated rulemaking, the push for consensus and closure creates unacceptable tension with the good government goals of openness and accountability. Proponents of consensus‐only bioethics commissions can learn from FACA‐related legislative, agency, and judicial insights that consensus‐seeking is not always desired by government officials; is rarely cost free; and that diversity and dissent enhance openness, accountability, and fairness. The burden of proof is therefore on proponents of a consensus‐only standard for bioethics commissions to demonstrate that a drive for consensus furthers sound decision‐making by government officials more than it sets back openness and accountability to a diverse public. (shrink)

This paper examines the drive for consensus from the perspective of the good government framework for federal advisory commissions in the United States. Specifically, the paper examines the Federal Advisory Committee Act (FACA) – the statute, its regulations, and case law. It shows that the FACA was intended to be an antidote to abuses in consensus‐making processes, including the failure to fully include competing views on commissions. The index of suspicion in the FACA scheme rises when a group (...) work product – including a consensus report – is to be the basis of recommendations to federal officials. Once FACA's requirements regarding committee composition are satisfied, the index of suspicion drops and FACA is indifferent to consensus‐making; but the conditions for informed, meaningful participation apply to members who dissent from, as well as those who participate in, consensus. In negotiated rulemaking, the push for consensus and closure creates unacceptable tension with the good government goals of openness and accountability. Proponents of consensus‐only bioethics commissions can learn from FACA‐related legislative, agency, and judicial insights that consensus‐seeking is not always desired by government officials; is rarely cost free; and that diversity and dissent enhance openness, accountability, and fairness. The burden of proof is therefore on proponents of a consensus‐only standard for bioethics commissions to demonstrate that a drive for consensus furthers sound decision‐making by government officials more than it sets back openness and accountability to a diverse public. (shrink)

Canadians frequently have recourse to public commissions as a means of dealing with contentious public policy issues. This essay examines the role of philosophers and philosophy in nine such commissions, all of which have dealt with issues in biomedical ethics. The principal findings of this essay are that philosophers have not been used extensively by these commissions, and that the philosophical aspects of the issues under investigation have been dealt with quite inadequately. The essay concludes (...) with suggestions for an expanded role for philosophers in such commissions. Keywords: bioethics, Canada, commissions, inquiries, philosophers CiteULike Connotea Del.icio.us What's this? (shrink)

In mid-June 2009, the Obama administration dissolved the President's Council on Bioethics (PCBE), a group established by President George W. Bush in August 2001 and whose nearly eight-year life was marked from beginning to end by controversy. While some will regret the PCBE's passing, others will regard the Council as a failed experiment in doing public bioethics.

The report produced by the National Bioethics Advisory Commission at the request of President Bill Clinton, titled Cloning Human Beings, provides a good example of the two-pronged approach to religion in bioethics. The report merits careful scrutiny precisely because of the deftness with which it appears to negotiate the thorny questions surrounding the role of religion in public policy. Analysis of the structure, arguments, and rhetoric of the report reveals the theoretical and practical inadequacy of the currently (...) reigning two-pronged approach to the role of religious perspectives in the field of bioethics. (shrink)

The coming of bioethics to Singapore / W. Calvin Ho and Sylvia S.N. Lim -- The impact of the bioethics advisory committee on the research community in Singapore / Charmaine K.M. Chan and Edison T. Liu -- Engaging the public : the role of the media / Chang Ai-Lien and Judith Tan -- Confucian trust and the biomedical regulatory framework in Singapore / Anh Tuan Nuyen -- The clinician-researcher : a servant of two masters? / Alastair V. (...) Campbell, Jacqueline Chin, and Teck Chuan Voo -- The US model for oversight of human stem cell research / Lindsay Parham and Bernard Lo -- Genetics and stem cell research : models of international policy-making / Bartha Maria Knoppers, Emily Kirby and Rosario Isasi -- Public engagement and bioethics commissions / Thomas H. Murray and Ross S. White -- Norm-making on human-animal chimeras and hybrids in Singapore, the United Kingdom and the international domain / W. Calvin Ho and Martin Bobrow -- How will future bioethical issues engage Singapore? / John Elliott. (shrink)

This paper argues, contrary to what has sometimes been claimed, that public commissions need to be more philosophical than they have been in analyzing crucial bioethical issues. It argues (a) that the failure of the President's Commission to develop and use even simple distinctions between life and personhood led to flaws in both its discussion of death and its discussion of persistent vegetative patients, and (b) that its treatment of access to health care fails to develop a coherent (...) approach precisely because it is based on no serious philosophical reflections about justice in health care. Keywords: justice in health care, life, persistent vegetative patients, personhood, President's Commission on Bioethics CiteULike Connotea Del.icio.us What's this? (shrink)

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

In 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)

Western society today is less unified by a set of core values than ever before. Undoubtedly, the concept of moral consensus is a difficult one in a liberal, democratic and pluralistic society. But it is imperative to avoid a rigid majoritarianism where sensitive personal values are at stake, as in bioethics. Bioethics has become an influential part of public and professional discussions of health care. It has helped frame issues of moral values and medicine as part of (...) a more general effort to find consensus about some of the most perplexing questions of our time. But why is it thought that a moral consensus is important or that it deserves respect? How does moral consensus acquire legitimacy in a society that includes diverse value systems? How is moral consensus possible and how do small groups help create or distort consensus processes? Written by a medical school professor trained in philosophy, this timely work tackles these questions from philosophical, historical, and social scientific standpoints. It begins by describing the traditional ambivalence about consensus in Western culture as well as the uncertain relationship in modernity between consensus and expertise. After outlining the current bioethical consensus, the book gives philosophical and political analyses of the idea of consensus, then assesses the role of consensus in national ethics commissions and in the ethics committee movement. Moreno constructs an original, naturalistic philosophy of moral consensus, referred to as "bioethical naturalism", and then applies sociology and social psychology to actual consensus processes. The book concludes with an account of bioethics as a consensus-oriented social reform movement. This insightful volume will be essential reading for bioethicists, philosophers, physicians, members of ethics committees, and all those concerned with ethical and social issues in health care. (shrink)