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

University Of Wisconsin-Madison, Madison WI

Investigators

Abstract

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.