Mark(er)ing Race: An Ethnographic Study of Human Difference in Contemporary Genetics

这项研究得到了科学技术社会计划和生物学会倡议下的NSF生物学理事会的支持，指出科学和社会正在进入一个关键时刻，以了解种族，人类变异和个体遗传风险。由于公共和私营部门都在资助全基因组分析，科学家和普通公众仍然不清楚种族的社会分类与人类遗传变异之间的联系，因为这些关系会影响疾病风险。 尽管如此，按照美国人口普查类别对DNA和其他生物标本进行分类的基因组研究已经成为许多基因组科学家可以接受的规范。 当常见的健康差异，如前列腺癌，不成比例地影响美国少数民族时，科学家如何解决这些问题的“最佳实践”问题？身份的社会类别如何以及在什么条件下有效地筛选人类基因组的生物遗传差异？ 最后，作为基因研究对象的少数群体成员和关心此事的非专业人士如何帮助塑造、修改或质疑种族归属的基因用途？ 这些问题的答案与公众对科学的理解越来越相关。 这项研究采用了广泛的观察分析和采访遗传学家和非专业人士，以记录人类变异遗传研究的社会和科学扩展如何影响社会生活的关键领域。 这些领域包括生物医学（通过疾病风险地图），法律（通过法医DNA数据库建设）和人格（通过身份标记框架为“祖先”）。这项人种学研究将开始回答的一个相关问题是，公众成员如何对他们的DNA可能被投入的无数潜在用途感到舒适或不舒适。这项社会科学研究的一个相关的主要组成部分将侧重于研究科学家的道德实践，他们考虑到生物和社会原因对多样化医疗包容性的重要性，同时也有个人承诺授权和代表不同社区成员的研究对象。 在一个实验室中，呼吁推进遗传学以解决不成比例地影响非洲裔美国人的问题，而在另一个实验室中，则呼吁支持个性化基因组学的新技术壮举，因为首席遗传学家对他们目标的个人表述与感知的社会需求相结合。 这项研究还调查了遗传学家的这种工作如何可能对某些社会群体的研究参与提出新的关注和限制。

This research, supported by the Science, Technology & Society program and the Biology Directorate at NSF under the Biology & Society initiative, notes that science and society are entering a pivotal moment with regard to understandings of race, human variation, and individual genetic risk. As genome-wide analyses are being funded in both the public and private sectors, scientists and members of the lay public remain unclear about the connections between social classifications of race and human genetic variation as these bear on disease risk. Nonetheless, genomic studies that sort DNA and other biological specimens by US census categories have become one acceptable norm for many in the genome sciences. How do scientists grapple with questions of "best practices" on these issues when common health disparities, such as prostate cancer, disproportionately affect US minorities? How, and under what conditions, are social categories of identity effective for sifting through biogenetic differences characteristic of the human genome? Finally, how do members of minority groups and concerned citizens of the lay public who are targeted for genetic studies help to shape, revise, or contest genetic uses of racial ascription? The answers to these questions are of increasing relevance to public understandings of science. This study employs extensive observational analyses and interviews with both geneticists and members of the lay public to chronicle how the societal and scientific expansion of genetic research on human variation influences key areas of social life. These areas include biomedicine (through disease risk mapping), law (through forensic DNA database building), and personhood (through identity markers framed as "ancestry"). One related question that this ethnographic study will begin to answer is how members of the public may or may not feel comfortable with the myriad potential uses to which their DNA can be put. A related major component of this social scientific study will focus on the ethical practices of research scientists who are mindful of the importance of diverse medical inclusion for biological and social reasons, while also having a personal commitment to empower and represent research subjects who are members of diverse communities. Appeals to advance genetics for conditions that disproportionately affect African-Americans, in one lab, and injunctions to support new technological feats of personalized genomics, in another, are compared as lead geneticists' personal articulations of their goals merge with perceived societal needs. This research also investigates how such work by geneticists may pose new concerns and constraints for the research participation of certain social groups.