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

基于群体的基因组研究最近的兴起，促使科学家和政策制定者承认了基因组时代的一个令人不安的困境：尽管人们的目标是强调人类的相似性，并创造出对所有个人都有利的知识，但在这个生命科学的前沿领域进行研究的实际实践，需要研究群体层面的人类基因变异。在过去的十年里，科学技术研究学术(S和TS)已经开始详细阐述关注群体所造成的困境。当代表要求参与生物医学研究时，他们的主张是代表团体提出的，他们试图在一定程度上诋毁这些团体的生物学现实。这项拟议的研究建立在这一学术基础上，以证明当作为研究对象的群体和为他们发言的群体不是事先确定，而是同时出现，或者说，共同产生时，出现了参与的新悖论。在过去的五年里，科学家和政策制定者已经开始创建程序，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监管。这些举措使研究人员、政策制定者和潜在的研究对象面临三个悖论，拟议的研究将对此进行调查：1)研究对象不早于研究项目；相反，这些项目参与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生物类别的种族近年来被历史上处于不利地位的群体用作主张更广泛法律权利的强大资源。通过半结构化访谈、民族志实地研究以及对话语和文本的分析，调查者将看到这三个悖论是如何在三个不同的地点得到解决的，每个地点都使用不同的机制来建立公众参与和确定界定群体的权威。这三个站点是：1)NIH的国际单倍型地图，它使用社区参与作为一种参与形式，并确定了在该州定义群体的权力；2)霍华德大学和国际HapMap之间的合作伙伴关系，它使用研究人员和研究人员之间的契约伙伴关系的概念；以及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。这项研究的学术价值在于收集了关于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了贡献：S和TS关于科学和社会秩序共同产生的紧急文献；S和TS关于参与科学研究的调查；以及关于种族和差异的社会理论。该项目的更广泛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涉及的概念问题，有可能影响研究设计，加强个人和社区在指导这项研究实现人类积极目的方面所能发挥的作用，并有助于提高科学研究机构和政策机构的能力，以解决种族困境和群体参与基因组研究的悖论。结果将包括面向学术和政策受众的出版物和演讲，以及为科学家、政策制定者和受影响社区举办的研讨会。

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.