Society's Choices Social and Ethical Decision Making in Biomedicine (1995) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-24
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These are the sorts of issues that come within the purview of public ethics bodies, including congressionally or presidentially appointed bodies, community-centered bodies, institutional 1
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The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) , which operated between 1974 and 1978 and became one of the most well-known public ethics bodies, was influential in developing these regulations and in stimulating the design of localized bodies, known as institutional review boards (IRBs)
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, which operated between 1980 and 1983; institutional ethics bodies known as hospital ethics committees; and community-based groups of health care consumers. Developments in the area of biotechnology have also raised publicly debated ethical quandaries.
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And as health care costs skyrocketed, additional factions insurers, employers, and hospitalsorganized to represent their interests. SYSTEMATIC APPROACHES TO BIOETHICS The events of the 1960s lent impetus to a growing interest in systematic thinking about social and ethical issues in biomedicine.
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Such functions include identification of ethical issues at stake in areas of societal controversy, analysis of an issue, development or documentation of areas of consensus, exposure and documentation of areas of disagreement, generation of public awareness and debate, development of factual bases for public policy, and recommendation of new legislation or improvements in existing public policy. Political and Legal Mechanisms Government responsibility to consider the ethical and social consequences of biomedical research arises from its support and encouragement of research as a means of advancing human welfare.
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None of these bodies is currently active, and Congress is presently considering the creation of a new national ethics body that might echo the success of the National and President's Commissions. Federally sponsored ethics bodies have also been situated within federal agencies that conduct biomedical research.
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Institutional review boards and hospital ethics committees are institution-based mechanisms for deliberation on ethical issues in biomedical research and health care. IRBs review protocols for research involving human subjects to ensure that the research does not violate ethical standards.
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In addition, experts in ethics from these centers are frequently called upon to serve on the boards of academic institutions, research centers, professional societies, and nonprofit organizations, as well as journal editorial boards. The Clinton administration's task force on health care reform provides a recent example of a public policy activity in which experts in ethics were called upon to participate in national bioethics deliberation.
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While certain general criteria can be articulated, their importance for evaluating a particular public ethics body is crucially dependent upon context, including the nature of the controversy, the specific tasks of the body, the social setting, the legal environment, and the like. Notwithstanding this caveat, it is still possible to develop a number of important criteria that could be used in establishing, participating in, orjudging the overall performance of public ethics bodies.
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Sound judgment Soundjudgment is also an important element—albeit less tangible and more controversial than logic and scholarship—of the intellectual integrity of public ethics bodies. Because ethical consideration is often complicated by uncertainty, lack of information, and conflicting values and principles, sound judgment in this area resides not so much in being able to apply a single ethical theory or principle to a set of facts, as in the ability to discern the unique particularities of the problem in its social setting, to creatively reframe a question, to reason by analogy, to perceive and acknowledge the interests of affected parties, and to judiciously weigh and balance compet
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Public ethics bodies should be particularly attentive to minority or disenfranchised voices, not only because these voices can enrich public discourse, but also because they may speak to concerns about religion, culture, and individual rights that ought to be respected, so far as possible, by public policy. Representation of Diverse Vines Public ethics bodies' consideration of the interests of affected parties should manifest itself not only in the solicitation of input from these parties, but also in the presence of representatives of (or advocates for)
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Communication The reports of public ethics bodies must be clearly written, trenchantly argued, and comprehensible to as wide an audience as possible. Reports should also reflect a clear understanding of the makeup of their audiences; reports that respect the sensibilities of their readers will be more persuasive, and hence more effective, than those that do not.
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Apart from the objective of forging consensus, public ethics bodies may also seek to achieve more specific goals such as education, influencing of public debate, and stimulation of various government actions, including legislation. Public ethics bodies should successfully discharge the specific mandates that they are given.
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While the energy and knowledge of advocacy groups can be an important asset to bodies engaged in bioethical deliberation, the possibility for capture, diversion, and conflict of interest in bioethical deliberation must be carefully monitored. This caution may be particularly important in deliberations regarding health care reform, where ethical and financial considerations are inextricably linked.
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have blossomed in all regions of the country. At the same time, certain contemporary ethical quandaries, including many ramif~cations of molecular genetic research, may best be considered for the nation as a whole through a supra-agency national commission.
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The more that it becomes the norm for consideration of these issues to be part of scientific investigation, the greater would be our society's capacity to catch problems in their early stages and address them more effectively. The committee recommends that the people or organizations that conduct, fund, and commercialize research, as well as those medical pronders who apply new technologies, establish a formal capacity whereby they can participate in public moral discourse about the ethical implications of developments in their field.
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The committee recommends that professional associations, including those for health care providers and biomedical scientists, recognize their special obligation to investigate the ethical implications of biomedical developments and advocate for the interests of the public and of patients, especially when those adversely affected by change are unable to advocate for themselves. The committee believes that hospital ethics committees or similar committees operating across health plans could help patients and health care professionals deal with social and ethical quandaries arising from developments in biomedicine.
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State governments might facilitate public ethical deliberation through their oversight of professional certification, medical practice, health care financing, and legal liability. Examples of issues that might be addressed at the state level include the use of reproductive technologies; laws and regulations concerning the "definition" of death and forgoing life-sustaining treatments; the practice of assisted suicide and active eutha
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A Supra-agency Commission For certain issues of broad national interest the committee finds it highly desirable to have a supra-agency national commission to address these issues as they concern the broad public interest and span multiple governmental agencies. At the present time there are several issues that
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The committee was unable to reach consensus regarding the appropriate breadth of a national commission's mandate. The majority of committee members believe that it is no longer feasible for any single national commission to address all aspects of social and ethical issues in biomedicine, since the expertise and experience that such a broad mandate would require could not be encompassed in a membership of reasonable size.
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A national commission should provide advice not only to its authorizing body but to all concerned parties, including the bim medical community; federal, state, and local governmental bodies; and the public. A~ion-F~ ng Powers.
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If a national commission has a fixed term, then the value of continuity and the "learning curve" favor a fixed membership. If a national commission has a sunset clause, then a rotating membership with staggered terms seems advisable, in part as a means to ensure diversity of views and avoid bureaucratic narrowing of the group's collective vision.
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EXECUTIVE SUMMARY 23 The committee believes that, during times when no national commission is functioning or when issues arise at an agency level but remain unaddressed, a continuing surveillance mechanism should be in place to identify developing unsolved problems that require more focused attention. A governmental locus for such monitoring could provide several specific functions: it could commission or prepare a biennial report to be published in the Federal Register on social and ethical issues emerging from biomedical technology; it could serve as a receptor for the input of communities, individuals, institutions, and states that identify issues that need to be addressed in a broad fashion; it could facilitate networking among the various groups addressing social and ethical issues; and it could advise the executive branch about special social and ethical issues that need immediate attention.
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