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

迈向生命伦理学的政治理论：联邦生命伦理学咨询委员会的参与、代表和审议

• 批准号: 0451289
• 负责人: Mark Brown
• 金额: $ 12.99万
• 依托单位: University Enterprises, Incorporated
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-01-01 至 2007-09-30
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=0451289&HistoricalAwards=false
• 关键词: Toward; Political; Theory; Bioethics; Participation

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.

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权问题。作为一个实践导向的政治理论练习，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。其目的不是要发现生物伦理学委员会运作的根本原因，而是要阐明它们的工作已经而且应该公开证明的理由。该项目将采用概念和经验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。拟议项目的智力价值在于它可能有助于最近在生物伦理学、政治理论和科学技术研究（STS）领域对专家咨询机构的研究。该项目涉及关于协商民主和代表制概念的政治理论工作;关于科学、道德和政治之间界限谈判的STS研究，以及关于参与性技术评估的可能性和局限性的STS研究;它谈到了生物伦理学家最近的努力，以一种有利于道德知情和民主合法决策的方式来概念化他们的职业-同时避免技术官僚主义、民粹主义和利益集团政治的极端。这个项目的跨学科方法承诺对这些问题的一个不寻常的和智力成果的角度。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促进民主解决生物医学研究的争议（例如，干细胞研究、基因治疗、生殖技术）。具体而言，该项目旨在帮助解决以下实际难题：如何挑选生物伦理委员会的成员，以促进不同观点的公平代表性;如何制定这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在生物伦理委员会中进行富有成效的交流;如何扩大非专业公民的参与，包括弱势社会群体的成员;以及如何平衡经常相互竞争的任务，即为决策者提供咨询，阐明公众关注的问题，激发公众讨论，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，以改善公众对联邦生物伦理咨询委员会的参与、代表性和审议。此外，拟议的研究具有显着的教学效益：它将提高主要研究者的能力，帮助学生理解生物伦理争议;提供课堂练习和学生研究项目的主要材料;并提供一个或多个本科研究助理深入接触项目主题和学术研究的进行。