Untangling the Development and Use of Infrastructures in the Production of Knowledge about Genetics, Blood, and Race

该项目利用有关种族概念复杂性和人口差异概念的社会科学知识，研究生物医学研究人员和医疗专业人员如何在其研究和治疗基础设施和实践中使用种族。它还考察了按种族分类的这些基础设施的组织在随后的关于遗传、血液和种族的知识生产中的影响。例如，血液基础结构的组织对骨髓移植和干细胞研究和治疗有影响。该项目将提供知识，帮助生命科学家和医学院进行研究，并可能重组研究和治疗基础设施。该项目还将提供知识，以补充正在进行的研究和对社会科学、生物伦理学和生命科学博士生以及医学和药学学生的培训。这项研究将促成一本书，旨在向广大读者介绍基础设施、标准、种族、遗传学和血液的社会研究，包括相关人文科学、社会科学、生命和医学科学的本科生。这个项目将阐明研究人员在研究人类群体之间的遗传和生物学差异时出现的困难的伦理和政治问题，特别是当它涉及已经使这个国家分裂的种族和民族差异时。目前的项目检查了血库和骨髓登记处以及遗传标记和饮食研究人员对种族和民族分类的使用情况。它涉及科学和技术研究中的两个主要主题。首先，它将促进有关科学基础设施和标准的社会科学研究。基础设施是一个术语，包括科学研究中使用的数据库、算法、模型和实践。这项科学基础设施的研究还包括对政策决策的分析，这些决策包括建立哪些基础设施以及如何组织这些基础设施；在基础设施中创建和构建数据的实验室实践、仪器和决策；以及使用基础设施中的数据的分析过程。其次，该项目考察了关于种族和民族的社会假设和观念是否以及如何成为研究和治疗基础设施、实践和结果的一部分。对种族分类的关注是正在进行的一系列研究的一部分，这些研究提出了关于在基因组和生物医学研究中使用种族分类的问题。该项目介绍了对血液基础设施中新设立的“多种族”类别的基本原理和影响的研究。研究地点包括大型、种族多元化城市的脐带血银行和骨髓登记处，目前是按种族和多种族类别组织的。这些站点的调查结果将与另一个州同样多样化的城市的类似基础设施进行比较。关于这些血液基础设施的研究结果将与PI先前在这两个城市进行的基因组生物标志物研究项目的研究结果进行比较。研究数据收集方法包括民族志观察、访谈和文献回顾，以及基于“扎根理论”方法的数据分析。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

This project uses social scientific knowledge about the complexities of notions of race and notions of population differences to examine how biomedical researchers and medical professionals use race in their research and therapeutic infrastructures and practices. It also examines the effects of the organization of these infrastructures by racial categories in the subsequent production of knowledge about genetics, blood, and race. For example, the organization of blood infrastructures has consequences for bone marrow transplantation and stem cell research and therapeutics. This project will provide knowledge that will assist life scientists and medical faculty with their research and with a potential reorganization of research and therapeutic infrastructures. The project will also provide knowledge to supplement ongoing research and training of Ph.D. students in the social sciences, bioethics, and life sciences, and to medical and pharmacy students. The research will contribute to a book designed to present social studies of infrastructures, standards, race, genetics, and blood to a broad readership, including undergraduate students in relevant humanities, social sciences, life and medical sciences. This project will shed light on difficult ethical and political questions that arise as researchers carry out research on genetic and biological differences amongst human groups, especially when it involves racial and ethnic differences that already divide this country. The current project examines the use of racial and ethnic categories by researchers who work with blood banks and bone marrow registries, as well as with genetic markers and diets. It engages two major topics in science and technology studies. First, it will contribute to social scientific scholarship on infrastructures and standards in science. Infrastructure is a term that includes the databases, algorithms, models and practices used in scientific research. This study of scientific infrastructures also includes an analysis of policy decisions about which infrastructures to build and how to organize them; the laboratory practices, instruments, and decisions that create and structure the data in infrastructures; and the analytic processes through which data in infrastructures are used. Second, the project examines whether and how social assumptions and ideas about race and ethnicity become part of research and therapeutic infrastructures, practices, and outcomes. This focus on race categories is part of an ongoing set of studies that has raised questions about the use of race categories in genomic and biomedical research. The project introduces the study of the rationale for and impact of a newly instituted category of "multiracials" into blood infrastructures. The research sites include cord blood banks and bone marrow registries in large, racially diverse city, which are currently organized by race and multiracial categories. The findings from these sites will be compared with similar infrastructures in a similarly diverse city in another state. The findings about these blood infrastructures will then be compared with the PI's previous findings from genomic biomarker research conducted in a project that was based in these two cities. Research data gathering methods include ethnographic observation, interviews and documentary reviews, and data analysis based on the "grounded theory" method.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.