Toward a Political Theory of Bioethics: Participation, Representation, and Deliberation on Federal Bioethics Advisory Committees

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The goal of this project is analyze and evaluate the actual and potential contribution of federal bioethics advisory committees to representative democracy in the United States. The project will devote special attention to questions of public participation, deliberation, and representation on bioethics committees. As an exercise in practice-oriented political theory, the project aims are not primarily explanatory but normative, analytic, and conceptual. The goal is not to discover the causes underlying the workings of bioethics committees, but rather to illuminate the reasons with which their work has been and should be publicly justified. The project will employ a combination of conceptual and empirical methods to elucidate and evaluate the norms and values of federal bioethics advisory committees. The intellectual merit of the proposed project lies in its potential contribution to recent research on expert advisory bodies in the fields of bioethics, political theory, and science and technology studies (STS). The project speaks to work in political theory on deliberative democracy and the concept of representation; to research in STS on the negotiation of boundaries among science, ethics, and politics, and on the possibilities and limits of participatory technology assessment; and it speaks to recent efforts among bioethicists to conceptualize their profession in a way that facilitates ethically informed and democratically legitimate decision-making while avoiding the extremes of technocracy, populism, and interest group politics. The interdisciplinary approach of this project promises an uncommon and intellectually fruitful perspective on these issues. The broad societal impact of the project lies in its potential contribution to the efforts of bioethics committees to facilitate the democratic resolution of controversies over biomedical research (e.g., stem cell research, genetic therapy, reproductive technologies). In particular, this project aims to help resolve difficult practical questions about how to select the members of bioethics committees so as promote the fair representation of diverse perspectives; how to structure the rules and procedures of such committees to foster effective deliberation; how to foster productive communication on bioethics committees among experts, interest group representatives, and lay citizens; how to expand the participation of lay citizens to include members of disadvantaged social groups; and how to balance the often competing tasks of advising policy makers, articulating public concerns, stimulating public discourse, and educating lay citizens. The analysis of these and related questions will culminate in a series of specific recommendations for improving public participation, representation, and deliberation on federal bioethics advisory committees. In addition, the proposed research has significant pedagogical benefits: it will improve the principal investigator's ability to help students understand bioethical controversies; provide primary materials for in-class exercises and student research projects; and offer one or more undergraduate research assistants in-depth exposure to both the project themes and the conduct of scholarly research.