Dissertation Research: Construction of the Human Genome Diversity Project

随着人口遗传学和人类多样性研究的日益突出，有关人类遗传多样性研究的科学和政治问题越来越多地面临政策制定者，资助机构，机构审查委员会，科学家和潜在研究对象的社区。本论文通过对人类基因组多样性项目的案例研究来解决这些问题。1991年，人口遗传学家和进化生物学家首次提出了多样性项目，旨在将全球人类基因组样本存档，以便进行进化和医学相关性研究。然而，自成立以来，多样性项目一直被争议所包围，它在很大程度上仍然处于规划阶段。关于多样性项目的争论反映了关于群体成员资格、定义和声音的科学和政治的更深层次的问题。为了阐明这些问题，论文研究项目探讨了争议的三个关键方面：关于群体的性质和边界的科学辩论;关于群体同意的道德和有效性的道德，社会和技术辩论;以及关于多样性项目主体是否以及如何参与规划和实施项目的道德和社会辩论。民族志和采访方法将被用来调查这些辩论交织在一起的程度，以及它们如何与北/南关系，种族和参与当代自由民主国家的复杂政治相互作用。在这样做的过程中，该项目将有助于科学和技术研究中一个新兴的调查领域，旨在对科学知识与道德和社会秩序“共同产生”的方式提供详细的经验分析。“这项研究还将通过探索科学实践与”种族“类别定义之间的复杂关系，增加关于种族与科学之间关系的学术辩论。“最后，该项目将阐明公众和学术界关于少数群体参与科学研究，群体同意以及当代自由民主国家种族，民族和群体身份的性质的讨论。

As the prominence of population genetics and studies of human diversity grows, issues concerning the science and politics of human genetic diversity research promise increasingly to confront policy makers, funding agencies, institutional review boards, scientists, and communities of potential research subjects. This dissertation research addresses these issues through a case study of the Human Genome Diversity Project. The Diversity Project, first proposed by population geneticists and evolutionary biologists in 1991, aims to archive a global sample of human genomes that would permit studies of both evolutionary and medical relevance. However, since its inception, the Diversity Project has been surrounded by controversy, and it still largely remains in the planning stage. The debates about the Diversity Project reflect deeper issues concerning the science and politics of group membership, definition, and voice. To illuminate these issues, the dissertation research project explores three key aspects of the controversy: the scientific debates about the nature and boundary of groups; the moral, social and technical debates about the ethics and validity of group consent; and the moral and social debate about whether and how Diversity Project subjects should participate in planning and implementing the Project. Ethnographic and interviewing methods will be used to investigate the extent to which these debates were intertwined, and how they interacted with the complex politics of North/South relations, race, and participation in contemporary liberal democracies. In so doing, the project will contribute to an emerging area of inquiry in science and technology studies that aims to provide detailed empirical analyses of the ways in which scientific knowledge and moral and social orders are "coproduced." The research will also add to the scholarly debate about the relationship between race and science by exploring the complex relations between scientific practices and the definition of categories of 'race.' Finally, the project will shed light on the public and scholarly discussions about minority participation in scientific research, group consent, and the nature of racial, ethnic and group identities in contemporary liberal democracies.