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Setting priorities: is there a role for citizens' juries?

Citizens' juries are an attempt to meaningfully involve members of the public in decisions which affect them in their own communities. The Institute for Public Policy Research and Cambridge and Huntingdon Health Authority have recently piloted the first jury in the United Kingdom. Sixteen jurors sat for four days, hearing evidence from a number of expert witnesses. The jurors were asked to consider how priorities for health care should be set, according to what criteria, and to what extent the public should be involved in this process. This pilot was also an attempt to assess the process itself, and our initial evaluation indicates that, given enough time and information, the public is willing and able to contribute to the debate about priority setting in health care.

Advisory Committees↗

Recruitment and communication process for participation in the 2005 AEM Consensus Conference on the Ethical Conduct of Resuscitation Research: methodology, challenges, lessons learned.

The 2005 Academic Emergency Medicine Consensus Conference, "Ethical Conduct of Resuscitation Research," was designed with the goal of developing consensus on important issues for human subjects and researchers surrounding the 1996 federal regulations jointly published by the Department of Health and Human Services and the Food and Drug Administration and known as the Final Rule. These regulations, which guide the conduct of research using the emergency exception from informed consent or waiver of informed consent, have been the subject of much debate in the resuscitation research community. Therefore, the editorial board of Academic Emergency Medicine chose this topic as the subject of their annual consensus conference. This report outlines the methods by which individuals and organizations were recruited to participate, how the conference was advertised, and the way in which participants and nonparticipants were encouraged to communicate before and after the conference. The limitations and potential biases of these methods and activities are also presented.

Committee Membership↗

Ethical decision making about animal experiments.

Laboratory animals, being vulnerable subjects, need the protection provided by adequate ethical review. This review falls primarily to Institutional Animal Care and Use Committees. A review committee's first duty is to identify which procedures ethically are unacceptable irrespective of any knowledge that might be derived. Examples are provided. These projects should be disapproved. Then, "on balance" judgments are assessed that weigh the animal harms against the potential benefits to humans. Several countries (but not the United States) use a classification system for ranking the degree of animal pain and distress. This type of assessment is essential for careful ethical analysis. Another way to enhance ethical discussion is to strive for a more balanced perspective of different viewpoints among members of decision making committees. Inclusion of representatives of animal welfare organizations and a greater proportion of nonanimal researchers would likely achieve this objective.

Animal Care Committees↗

Role of the institutional animal care and use committee in monitoring research.

During the 1980s, federal regulations transferred significant portions of the responsibility for monitoring the care and use of research animals from animal care programs to Institutional Animal Care and Use Committees (IACUCs). After a brief review of the history of the regulation of the use of animals in research preceding and during the 4 decades following World War II, this article raises 4 problems associated with the role IACUCs currently play in monitoring the use of animals in research: (a) lack of expertise, (b) diverted resources, (c) conflict of interest, and (d) restrictions of academic freedom. It is concluded that the care and treatment of animals used in research would be served better and organized more rationally if the day-to-day responsibilities for approving projects and caring for animals were separated more clearly from broader, oversight functions, with the former being assigned to animal care programs and the latter to IACUCs.

Academies and Institutes↗

Animal ethical evaluation: an observational study of Canadian IACUCs.

Three Canadian institutional animal care and use committees were observed over a 1-year period to investigate animal ethical evaluation. While each protocol was evaluated, the observer collected information about the final decision, the type of protocol (research vs. teaching), and the category of invasiveness. The observer also wrote down verbatim all verbal interventions, which were coded according to the following categories: scientific, technical, politics, human analog, reduction, refinement, and replacement. The data revealed that only 16% of the comments were devoted to the 3 explicit ethical categories (i.e., reduction, refinement, and replacement) and that most of the comments were technical. However, the analysis revealed that ethical concerns were implicit in both scientific and technical language, or some of the scientific and technical comments had an impact on the ethical treatment of animals. The results are discussed in relation to previous nonobservational research that identified potential pitfalls and bias in animal ethical evaluation.

Animal Care Committees↗

Allocating health care: cost-utility analysis, informed democratic decision making, or the veil of ignorance?

Assuming that rationing health care is unavoidable, and that it requires moral reasoning, how should we allocate limited health care resources? This question is difficult because our pluralistic, liberal society has no consensus on a conception of distributive justice. In this article I focus on an alternative: Who shall decide how to ration health care, and how shall this be done to respect autonomy, pluralism, liberalism, and fairness? I explore three processes for making rationing decisions: cost-utility analysis, informed democratic decision making, and applications of the veil of ignorance. I evaluate these processes as examples of procedural justice, assuming that there is no outcome considered the most just. I use consent as a criterion to judge competing processes so that rationing decisions are, to some extent, self-imposed. I also examine the processes' feasibility in our current health care system. Cost-utility analysis does not meet criteria for actual or presumed consent, even if costs and health-related utility could be measured perfectly. Existing structures of government cannot creditably assimilate the information required for sound rationing decisions, and grassroots efforts are not representative. Applications of the veil of ignorance are more useful for identifying principles relevant to health care rationing than for making concrete rationing decisions. I outline a process of decision making, specifically for health care, that relies on substantive, selected representation, respects pluralism, liberalism, and deliberative democracy, and could be implemented at the community or organizational level.

Advisory Committees↗

Bioethics in the third millennium: some critical anticipations.

Its promises to the contrary notwithstanding, bioethics is plural. There is a diversity of content-full moral undertandings of the good and the right. Moreover, there is no secular means in principle to set this diversity aside without begging the question. This moral diversity exists both as a sociological condition and as a moral epistemological constraint. Without succumbing to a metaphysical scepticism or moral relativism, the bioethics of the future, if it is to be honest, should learn how to live with robust moral diversity.

Advisory Committees↗

Reflections on public bioethics: a view from the trenches.

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.

Advisory Committees↗