Paradoxes of Participation: The Status of 'Groups' in Liberal Democracies in an Age of Genomics

参与的悖论：基因组时代自由民主国家中“群体”的地位

• 批准号: 0351475
• 负责人: Jennifer Reardon
• 金额: $ 12万
• 依托单位: Brown University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-06-01 至 2006-02-28
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=0351475&HistoricalAwards=false
• 关键词: Paradoxes; Participation; Status; Groups; Liberal

The recent rise of population-based genomic research has led scientists and policy makers to acknowledge a troubling predicament of the genomic age: despite the intended goal of underscoring human sameness and producing knowledge that benefits all individuals, the actual practice of research at this frontier area of the life sciences entails studying group-level human genetic variation. In the last decade, scholarship in science and technology studies (S&TS) has begun to elaborate the dilemmas caused by the focus on groups. When representatives demand to participate in biomedical research, their claims are made on behalf of groups whose very biological reality they seek in part to discredit. The proposed research builds upon this scholarship to demonstrate the new paradoxes of participation that emerge when the groups who are to be the objects of research and those who speak for them are not determined in advance, but emerge simultaneously or, in a word, are co-produced. In the last five years scientists and policy makers have begun to create processes that would enable groups to participate meaningfully in the design and regulation of population-based genomic research. These initiatives confront researchers, policy makers and potential research subjects with three paradoxes that the proposed study will investigate: 1) the objects of research do not predate research projects; instead these projects participate in the very act of constituting their objects of study; 2) efforts to reconstruct difference by abandoning race often serve to re-inscribe racial categories in new ways; 3) biological categories of race conventionally thought to be discriminatory have in recent years served as powerful resources used by historically disadvantaged groups to claim wider legal rights. Using semi-structured interviews, ethnographic field research, and analysis of discourse and texts, the investigator will look at how these three paradoxes are being addressed at three different sites, each of which is using a different mechanism for building public participation and locating authority for defining groups. The three sites are: 1) the NIH's International Haplotype Map that uses community engagement as a participatory form and locates the authority to define groups in the state; 2) the partnership between Howard University and the International HapMap which uses the concept of a contractual partnership between researchers and researched; and 3) the Navajo Nation Human Research Review Board that uses a theory of sovereignty for defining groups and participation. The intellectual merit of the research lies in collecting new data on these participatory mechanisms and using this information to contribute to several scholarly literatures: an emergent literature in S&TS on the co-production of scientific and social order; S&TS investigations of participation in scientific research; and social theories on race and difference. The project's broader impacts will include contributions to science and to policy. A greater understanding of the conceptual problems that underlie contemporary debates about the status of groups in liberal democracies and the life sciences has the potential to influence research design, to strengthen the roles individuals and communities can play in directing this research for positive human ends, and to contribute to improving the capacities of institutions of scientific research and policy to address the dilemmas of race and the paradoxes of group participation in genomic research. Results will include publications and presentations for academic and policy audiences as well as a workshop for scientists, policymakers, and affected communities.

最近兴起的基于人群的基因组研究使科学家和政策制定者认识到基因组时代令人不安的困境：尽管预期目标是强调人类的同一性并产生有益于所有人的知识，但在生命科学的这一前沿领域的实际研究实践需要研究群体水平的人类遗传变异。 在过去的十年中，在科学和技术研究（S TS）的学术已经开始阐述的困境所造成的关注群体。 当代表们要求参加生物医学研究时，他们的主张是代表他们试图部分诋毁其生物学现实的群体提出的。 拟议的研究建立在这一奖学金，以证明新的悖论的参与出现时，群体谁是研究对象和那些谁为他们说话是不是事先确定的，但同时出现，或者一句话，共同产生。 在过去的五年里，科学家和决策者已经开始创造程序，使群体能够有意义地参与基于人口的基因组研究的设计和管理。 这些举措使研究人员、决策者和潜在的研究对象面临三个悖论，拟议的研究将探讨这三个悖论：1）研究对象并不先于研究项目;相反，这些项目参与了构成其研究对象的行为; 2）通过放弃种族来重建差异的努力往往有助于以新的方式重新列入种族类别; 3）传统上被认为具有歧视性的种族生物学类别近年来成为历史上处于不利地位的群体用来要求更广泛的法律的权利的强大资源。 使用半结构化访谈，民族志实地研究，话语和文本分析，调查员将看看这三个悖论是如何在三个不同的网站，其中每一个是使用不同的机制来建立公众参与和定位权威的定义组被解决。 这三个网站是：1）NIH的国际单倍型图，它使用社区参与作为参与形式，并在州内定位定义群体的权威; 2）霍华德大学和国际单倍型图之间的伙伴关系，它使用研究人员和被研究者之间的合同伙伴关系概念; 3）纳瓦霍民族人类研究审查委员会，它使用主权理论来定义群体和参与。 该研究的智力价值在于收集有关这些参与机制的新数据，并利用这些信息为几篇学术文献做出贡献：关于科学和社会秩序共同生产的S TS新兴文献;参与科学研究的S TS调查;以及关于种族和差异的社会理论。 该项目更广泛的影响将包括对科学和政策的贡献。 更好地理解当代关于自由民主国家和生命科学中群体地位的辩论所依据的概念问题，有可能影响研究设计，加强个人和社区在指导这一研究以实现积极的人类目的方面所能发挥的作用，并帮助提高科学研究和政策机构的能力，以解决种族的困境和群体的矛盾，参与基因组研究。 成果将包括为学术界和政策受众出版物和介绍，以及为科学家、决策者和受影响社区举办讲习班。