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

该项目的目标是分析和评估联邦生物伦理咨询委员会对美国代议制民主的实际和潜在贡献。该项目将特别关注公众参与、审议和在生物伦理委员会中的代表性问题。作为以实践为导向的政治理论练习，该项目的目标主要不是解释性的，而是规范性的、分析性的和概念性的。我们的目标不是发现生物伦理委员会工作的根本原因，而是阐明他们的工作已经和应该公开证明的原因。该项目将采用概念性和经验性相结合的方法来阐明和评估联邦生物伦理咨询委员会的规范和价值观。拟议项目的学术价值在于它对最近关于生物伦理学、政治理论和科学技术研究(STS)领域的专家咨询机构的研究做出了潜在贡献。该项目涉及协商民主和代表权概念的政治理论；STS研究科学、伦理和政治之间的界限协商，以及参与性技术评估的可能性和局限性；它还涉及生物伦理学家最近努力使他们的职业概念化，以促进伦理知情和民主合法的决策，同时避免极端的技术官僚、民粹主义和利益集团政治。这个项目的跨学科方法保证了在这些问题上有一个不同寻常的和智力上富有成效的视角。该项目的广泛社会影响在于它可能有助于生物伦理委员会努力促进以民主方式解决有关生物医学研究(如干细胞研究、基因治疗、生殖技术)的争议。特别是，该项目旨在帮助解决以下实际难题：如何选择生物伦理委员会的成员，以促进不同观点的公平表达；如何构建此类委员会的规则和程序，以促进有效的审议；如何促进专家、利益集团代表和非专业公民之间关于生物伦理委员会的富有成效的沟通；如何扩大非专业公民的参与，使其包括处于不利地位的社会群体的成员；以及如何平衡经常相互竞争的任务--向决策者提供咨询、阐明公共关切、刺激公共话语和教育非专业公民。对这些问题和相关问题的分析将最终形成一系列具体建议，以改善联邦生物伦理咨询委员会的公众参与、代表性和审议。此外，拟议的研究具有显著的教学效益：它将提高首席研究人员帮助学生理解生物伦理学争议的能力；为课堂练习和学生研究项目提供原始材料；并为一名或多名本科生研究助理提供深入接触项目主题和学术研究的机会。

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.