Social Equity, Group Identity, and the Management of Difference in Research on Human Populations

本项目分析人口科学研究中的差异管理和对社会公平的关注。具体而言，该项目跟踪将性别和种族作为变量纳入生物和生物医学研究的设计和评估。虽然一些人认为这些政策促进了更公平和更有能力产生充分、可概括的数据的研究，但另一些人则认为这些要求妨碍了严谨研究的进行。中心案例研究将是最近在随机临床试验等实验中纳入妇女和少数种族群体成员的规定。此外，该项目还将分析包括人类基因组计划在内的其他生物研究领域对性别和种族多样性问题的关注程度。该项目旨在确定最近推动将不同主题人群纳入生物医学和生物学研究的原因和后果。它提出，科学机构应该如何以及以何种方式对社会和身体差异的概念敏感。该研究还探讨了这种差异管理对获取有关人体的生物医学和生物学知识的实际影响，以及对性别和种族作为身体标志和社会身份决定因素的更广泛的文化理解。采用的方法包括：1)分析政府记录和已发表的临床试验报告的内容，以衡量人体生物实验人口多样性的变化；2)与研究人员、政府官员、政治家和活动家进行开放式、半结构化的访谈，以重建近期有关将妇女和少数民族纳入生物医学研究的政策变化的历史；3)通过数据库搜索，检索大众媒体、科学媒体和国会记录中的相关文章。还有其他来源。本研究对科学家、科技研究从业者以及广大公众具有重要意义。对于科学家来说，这个项目具有相当大的相关性，因为它将分析政策转变的原因和后果，这些政策转变将集中影响他们的工作。对于科学和技术研究的实践者来说，该项目有助于就实验（特别是对人类受试者进行的实验，如随机临床试验）的可信度进行公开谈判，并有助于研究科学的公共问责制以及科学与社会运动之间的关系。对于普通大众，该研究分析了“身份政治”对实际科学实践的影响。研究结果将以面向专业读者的期刊文章、会议报告和面向广大学者和受过良好教育的外行读者的一本书的形式呈现。

This project analyzes the management of difference and the concern with social equity in scientific research on human populations. Specifically, the project tracks the incorporation of gender and race as variables in the design and evaluation of biological and biomedical research. While some argue that these policies promote research that is both more equitable and more capable of producing adequate, generalizable data, others suggest that such requirements interfere with the conduct of rigorous research. The central case study will be the recent mandates to include women and members of racial minority groups in experiments such as randomized clinical trials. In addition, the project will analyze the extent of concern with issues of gender and racial diversity in other domains of biological research, including the Human Genome Project. The project seeks to identify the causes and consequences of the recent push for the inclusion of diverse subject populations in biomedical and biological research. It asks how, and in what ways, scientific institutions should be sensitive to conceptions of social and bodily difference. And the study explores the practical consequences of this management of difference for the acquisition of biomedical and biological knowledge about the human body, as well as for broader cultural understandings of gender and race as bodily markers and determinants of social identity. The methods to be employed include: 1) analysis of government records and content analysis of published reports of clinical trials to measure changes in the demographic diversity of biological experiments on human subjects; 2) open-ended, semi-structured interviews with researchers, government officials, politicians, and activists to reconstruct the history of recent policy changes regarding the inclusion of women and racial minorities in biomedical research; and 3) database searches to retrieve relevant articles in the mass media, the scientific press, the Congressional Record. and other sources. This study holds significance for scientists, practitioners of science and technology studies, and the public at large. For scientists, the project has considerable relevance because it will analyze the causes and consequences of policy shifts that centrally affect their work. For practitioners of science and technology studies, the project contributes to debates concerning the public negotiation of the credibility of experiments (particularly experiments conducted on human subjects, such as randomized clinical trials) as well as contributing to research on the public accountability of science and the relation between science and social movements. For the general public, the study analyzes the impact of `identity politics` upon actual scientific practice. Study findings will be presented in the form of journal articles directed to specialized audiences, presentations at conferences, and a book intended for a wide audience of academics and educated lay readers.