Dissertation Research: Construction of the Human Genome Diversity Project

随着群体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摆在决策者、资助机构、机构审查委员会、科学家和潜在研究对象社区面前。本论文以人类基因组多样性计划为个案，探讨这些问题。多样性计划最初由种群遗传学家和进化生物学家于1991年提出，旨在存档全球人类基因组样本，以便进行进化和医学相关的研究。然而，从一开始，多样性项目就充满了争议，它在很大程度上仍处于规划阶段。关于多样性项目的辩论反映了更深层次的问题，涉及群体成员、定义和声音的科学和政治。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：关于群体性质和边界的科学辩论；关于群体同意的伦理和有效性的道德、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项目规划和实施的道德和社会辩论。人种学和访谈方法将用于调查这些辩论交织在一起的程度，以及它们如何与南北关系，种族和参与当代自由民主的复杂政治相互作用。通过这样做，该项目将有助于科学和技术研究中一个新兴的探究领域，该领域旨在对科学知识与道德和社会秩序“共同产生”的方式提供详细的实证分析。该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，该项目将阐明有关少数民族参与科学研究、群体同意以及当代自由民主国家中种族、民族和群体身份的本质的公众和学术讨论。

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.