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

标记种族：当代遗传学中人类差异的民族志研究

• 批准号: 0849109
• 负责人: Duana Fullwiley
• 金额: $ 17.64万
• 依托单位: Harvard University
• 依托单位国家: 美国
• 项目类别: Continuing Grant
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-04-01 至 2012-03-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=0849109&HistoricalAwards=false
• 关键词: Mark; er; ing; Race; Ethnographic

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.

这项研究得到了科学、技术与社会计划以及美国国家科学基金会生物学理事会在生物与社会倡议下的支持，指出科学和社会正在进入理解种族、人类变异和个体遗传风险的关键时刻。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社会分类与人类遗传变异之间的联系，因为这些与疾病风险有关。 尽管如此，按照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成为许多基因组科学领域可接受的规范。 当前列腺癌等常见健康差异对美国少数族裔造成不成比例的影响时，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特征？ 最后，作为基因研究目标的少数群体成员和相关的普通公众如何帮助塑造、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对遗传学家和普通公众的采访，记录了人类变异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（通过疾病风险绘图）、法律（通过法医 DNA 数据库构建）和人格（通过被定义为“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，公众可能会或可能不会对其 DNA 的无数潜在用途感到满意。这项社会科学研究的一个相关主要组成部分将重点关注研究科学家的道德实践，他们意识到多元化医疗包容性出于生物学和社会原因的重要性，同时也个人致力于赋予和代表来自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对非裔美国人影响尤为严重的疾病，而在另一个实验室中，则将支持个性化基因组学新技术的禁令进行比较，因为主要遗传学家对其目标的个人阐述与感知的社会需求相融合。 这项研究还调查了遗传学家的此类工作如何可能对某些社会群体的研究参与造成新的担忧和限制。