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

这项研究得到了科学、技术与社会计划和NSF生物与社会倡议下的生物学委员会的支持，指出科学和社会正在进入关于种族、人类变异和个人遗传风险的理解的关键时刻。由于全基因组分析在公共和私营部门都得到了资助，科学家和普通公众仍然不清楚种族的社会分类和人类基因变异之间的联系，因为这些与疾病风险有关。尽管如此，根据美国人口普查类别对DNA和其他生物样本进行分类的基因组研究已经成为基因组科学中许多人可以接受的规范。当前列腺癌等常见的健康差距对美国少数民族造成不成比例的影响时，科学家们如何应对在这些问题上的“最佳实践”问题？如何以及在什么条件下，社会身份类别对于筛选人类基因组特有的生物遗传差异是有效的？最后，作为基因研究目标的少数群体成员和忧心忡忡的公众公民如何帮助塑造、修改或质疑种族归属的遗传用途？这些问题的答案与公众对科学的理解越来越相关。这项研究使用了广泛的观察分析和对遗传学家和普通公众的采访，以记录关于人类变异的基因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(通过疾病风险测绘)、法律(通过建立法医DNA数据库)和人格(通过被框定为“祖先”的身份标记)。这项人种学研究将开始回答的一个相关问题是，公众可能会对他们的DNA可以用于的无数潜在用途感到满意，也可能不会感到舒服。这项社会科学研究的一个相关主要组成部分将侧重于研究科学家的道德实践，他们牢记出于生物和社会原因而纳入不同医学的重要性，同时也有个人承诺赋予不同社区成员的研究对象权力并代表他们。在一个实验室中，针对那些对非裔美国人影响不成比例的疾病，人们呼吁推进遗传学，而在另一个实验室，人们将支持个性化基因组学新技术壮举的禁令与领先遗传学家对其目标的个人阐述与感知的社会需求相比较。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担忧和限制。

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.