These are just some of the many controversial and timely questions that Sheila Jasanoff asks in this study of the way science advisers shape federal policy.

Chapter 1 FROM ORDER TO DISORDER 5 mins. John enters and goes into his office. He says something very quickly about having made a bad mistake. He had sent the review of a paper. . . . The rest of the sentence is inaudible. 5 mins.

In an unusual instance of lay participation in biomedical research, U.S. AIDS treatment activists have constituted themselves as credible participants in the process of knowledge construction, thereby bringing about changes in the epistemic practices of biomedical research. This article examines the mechanisms or tactics by which these lay activists have constructed their credibility in the eyes of AIDS researchers and government officials. It considers the inwlications of such interventions for the conduct of medical research; examines some of the ironies, tensions, (...) and limitations in the process; and argues for the importance of studying social movements that engage with expert knowledge. (shrink)

Whether ethics is too important to be left to the experts or so important that it must be is an age-old question. The emergence of clinical ethicists raises it again, as a question about professionalism. What role clinical ethicists should play in healthcare decision making – teacher, mediator, or consultant – is a question that has generated considerable debate but no consensus.

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)

For years analysts have recognized the error of assuming that experts in medical science are also experts in deciding the clinically correct course for patients. This paper extends the analysis of the use of the consensus of experts to their use in public policy groups such as NIH Consensus Development panels. After arguing that technical experts cannot be expected to be expert on public policy decisions, the author extends the criticism to the use of the consensus of experts in estimating (...) facts to provide a basis for policy decisions. It is argued that to the extent that (a) experts' views regarding a body of facts can be expected to correlate with their values relevant to those facts; and (b) the values of experts differ from the values of lay people, even the estimates of the facts given by the consensus of expert panels can be expected to differ from the estimates lay people would have given had they had the relevant scientific expertise. Keywords: consensus, expertise, fact/value distinction, NIH Consensus Development Panels CiteULike Connotea Del.icio.us What's this? (shrink)

"--David Dickson, New York Times Book Review "The Whale and the Reactor is the philosopher's equivalent of superb public history.

Consensus is commonly identified as the goal of ethics committee deliberation, but it is not clear what is morally authoritative about consensus. Various problems with the concept of an ethics committee in a health care institution are identified. The problem of consensus is placed in the context of the debate about realism in moral epistemology, and this is shown to be of interest for ethics committees. But further difficulties, such as the fact that consensus at one level of discourse need (...) not imply consensus at another, oblige us to look more closely at the deliberative process itself. That yields two complementary methods of deliberation that have proven their worth. Finally, placing ethics committees in the context of Dewey's philosophy of social intelligence suggests that consensus should be regarded primarily as a condition rather than as the goal of inquiry. Keywords: ethics committee, consensus, moral authority CiteULike Connotea Del.icio.us What's this? (shrink)

On the morning of December 2, 1994, after a preceding afternoon of discussion, the Advisory Committee to the Director of the National Institutes of Health unanimously voted to approve the recommendations of the Report of the Human Embryo Research Panel. Panel members like myself who were present were elated. The vote marked the culmination of nearly a year of work. Approval of the report also represented a decisive step forward in bringing an end to a 15-year long moratorium on federally (...) funded research on the preimplantation human embryo and techniques of in vitro fertilization. (shrink)

Consensus conferences, also known as citizens’ panels—a collection of lay citizens akin to a jury but charged with deliberating on policy issues with a high technical content—are a potentially important way to conduct technology assessments, inform policy makers about public views of new technologies, and improve public understanding of and participation in technological decision making. The first citizens’ panel in the United States occurred in April 1997 on the issue of “Telecommunications and the Future of Democracy.” This article evaluates the (...) impact of this citizens’ panel. The standard criteria to evaluate the impact of analyses focus on the “actual impact” and on the “impact on general thinking.” To these standard criteria, this article introduces the evaluation of two impacts related to learning: impact on the training of knowledgeable personnel and the interaction with lay knowledge. The impact evaluation is based on a nearly comprehensive set of semistructured telephone interviews with the participants in the panel. (shrink)

The concept of consensus is often appealed to in discussions of biomedical ethics and applied ethics, and it plays an important role in many influential ethical theories. Consensus is an especially influential notion among theorists who reject ethical realism and who frame ethics as a practice of discourse rather than a body of objective knowledge. It is also a practically important notion when moral decision making is subject to bureaucratic organization and oversight, as is increasingly becoming the case in medicine. (...) Two models of consensus are examined and criticized: pluralistic consensus and overlapping consensus. As an alternative to these models, the paper argues that consensus refers to the dialogic aspects of a broader normative conception of democratic moral agency. When the preconditions for that dialogic democratic practice are met, consensus has a justificatory role in ethics; when they are not, consensus, as distinct from mere agreement, does not emerge and can have no moral authority. Keywords: applied ethics, bioethics, consensus, contract theory, democracy, discourse ethics, liberalism CiteULike Connotea Del.icio.us What's this? (shrink)

Following a brief account of the puzzle that ethics committees present for the Western Philosophical tradition, I will examine the possibility that social contract theory can contribute to a philosophical account of these committees. Passing through classical as well as contemporary theories, particularly Rawls' recent constructivist approach, I will argue that social contract theory places severe constraints on the authority that may legitimately be granted to ethics committees. This, I conclude, speaks more about the suitability of the theory to this (...) level of analysis than about the ethics committee phenomenon itself. Keywords: ethics committees, moral consensus, social contract theory CiteULike Connotea Del.icio.us What's this? (shrink)

In this paper I examine the epistemology and ethics of consensus, focusing on the ways in which decision makers use/misuse ethical expertise. The major questions I raise and tentative answers I give are the following: First, are the ‘experts’ really experts? My tentative answer is that they are bona fide experts who often represent specific interest groups. Second, is the experts' authority merely epistemological or is it also ethical? My tentative answer is that the experts' authority consists not only in (...) their command over specific matters of fact and/or value, but also in their ability to achieve ‘consensus’ about what is ‘true’/‘false’, or ‘right’/‘wrong’. Third, should the authority of expertise be limited? My tentative answer is that it should be limited in the area of facts but especially in the area of values. Persons who are ethics ‘experts’ must be particularly careful to practice an ethics of persuasion rather than an ethics of compulsion . Their role is not to force their group consensus upon decision makers' individual moral perceptions and deliberations; rather it is to help decision makers come to their own conclusions about what they ought to do. Keywords: authority of expertise, consensus, ethics committees, ethics of persuasion, NIH consensus development conferences CiteULike Connotea Del.icio.us What's this? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:At the Vortex of Controversy:Developing Guidelines for Human Embryo ResearchRonald M. Green (bio)Because of the unavoidable time delay between the submission and publication of this article, its readers will have a significant advantage over its writer: You will know whether the recommendations of the Report of the Human Embryo Research Panel, on which I have served as a member since its inception in January of this year, are progressing (...) smoothly as the basis for evaluating future, federally-funded embryo research—or whether any of the recommendations has become stalled in controversy and political dispute. Staid journals like Science already are predicting that the Panel's Report is likely to create a stormy autumn for the National Institutes of Health.The Panel formally presented its Report to NIH Director Harold Varmus on September 27. The Panel's recommendations will be reviewed by the Advisory Committee to the Director (ACD) until the ACD's next meeting in early December. At that time, the ACD will make formal recommendations to Dr. Varmus, who then will initiate the process of drafting federal regulations that could go into effect by Spring 1995.Historical BackgroundControversy is not new to the area of human embryo research. In the United States, federal regulations enacted in the mid-1970s required any research on the human embryo to be approved by a federally mandated Ethics Advisory Board (EAB). The EAB drafted a significant report that provided ethical guidelines for research on the early, ex utero, human embryo. However, before the report could be acted upon, a new administration, which was opposed to abortion and anything remotely viewed as threatening to prenatal life, came to office, and when the EAB's charter expired in 1980, it was not renewed. In this manner, the Reagan and Bush administrations forestalled any federal support for embryo research in the United States. The next 13 years saw a significant expansion of infertility services in this country, but in the absence of federal funding and [End Page 345] review, there was very little systematic research on either infertility procedures or the human embryo.In January 1993, the U.S. political environment changed again when the Clinton administration fulfilled a campaign promise to remove a nearly five-year-old ban on fetal tissue transplantation research. Although fetal tissue research, which uses the remains of an aborted fetus, significantly differs from embryo research, which involves the developing conceptus ex utero before its transfer to and implantation in a womb, the changed political environment stimulated public discussion of embryo research as well. As a result, in June 1993, Congress nullified the federal regulations requiring EAB review for embryo research. Although this presumably left NIH free to fund embryo research without restrictions, NIH officials felt that guidelines were needed to ensure that such research was conducted in an ethically and socially responsible manner. Accordingly, in January 1994, NIH formed the Human Embryo Research Panel to propose such guidelines.The Panel Begins its WorkChaired by Steven Muller, President emeritus of the Johns Hopkins University, the Panel's 19 members included 7 basic and clinical scientists, 4 ethicists, 2 lawyers, and 6 individuals representing various backgrounds relevant to the making of public policy. Patricia King of the Georgetown University Law Center and Brigid Hogan, a cell biologist at Vanderbilt University, were appointed policy and science co-chairs respectively. Meeting for the first time in early February, the Panel was told by its chair and co-chairs that NIH's need for guidance in the face of pending proposals meant that it had approximately six months—including five one- to two-day meetings each month in Washington—in which to complete its work.In his charge, Dr. Varmus asked the Panel to place the possible areas of research into three categories: (1) acceptable for federal funding; (2) warranting additional review; and (3) unacceptable for federal support. In addition, he asked the Panel to draft guidelines for the review and conduct of the research deemed acceptable.Looking back after months of work, I vividly recall a sense of the enormity of the task facing us. We were being asked, in a short period of time, not only to master... (shrink)