Strategies of inclusion

The tradeoffs of pursuing "baked in" diversity through place-based recruitment

Datos Bibliográficos

ID4592795
AutoresJanet K Shim (0000-0002-4597-7961, University of California, San Francisco, autor de correspondencia), Michael Bentz (0000-0002-0475-2563), Michael L Bentz (Cal Humanities), Emily E Vasquez (University of Illinois Chicago), Emily Vasquez, M Jeske (0000-0003-0743-5974, University of Chicago), Aliya Saperstein (0000-0002-6429-1172, Stanford University), Stephanie M Fullerton (0000-0002-0938-6048, University of Washington), Nicole Foti (0000-0002-8812-8724, University of California, San Francisco), Caitlin E Mcmahon (0000-0003-1621-7389, Cal Humanities), Sandra Soo-Jin Lee (0000-0002-2312-9814, Cal Humanities)
Año2022
Volumen306
Páginas115132
Fecha de publicación2022-08-01
Peer ReviewedSí
Open AccessSí
TipoARTICLE
RevistaSocial Science & Medicine (JOURNAL)
Identificadores de la revistaISSN: 0277-9536 • E-ISSN: 1873-5347
EditorialElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2022.115132
PMID35728460
OpenAlexW4282929953
IdiomaEN
Citas recibidas6
Referencias citadas27

US funding agencies have begun to institutionalize expectations that biomedical studies achieve defined thresholds for diversity among research participants, including in precision medicine research (PMR). In this paper, we examine how practices of recruitment have unfolded in the wake of these diversity mandates. We find that a very common approach to seeking diverse participants leverages understandings of spatial, geographic, and site diversity as proxies and access points for participant diversity. That is, PMR investigators recruit from a diverse sampling of geographic areas, neighborhoods, sites, and institutional settings as both opportunistic but also meaningful ways to "bake in" participant diversity. In this way, logics of geographic and institutional diversity shift the question from who to recruit, to where. However, despite seeing geographic and site diversity as social and scientific 'goods' in the abstract and as key to getting diverse participants, PMR teams told us that working with diverse sites was often difficult in practice due to constraints in funding, time, and personnel, and inadequate research infrastructures and capacity. Thus, the ways in which these geographic and institutional diversity strategies were implemented resulted ultimately in limiting the meaningful inclusion of populations and organizations that had not previously participated in biomedical research and reproduced the inclusion of institutions that are already represented. These prevailing assumptions about and practices of "baked-in" diversity in fact exacerbate and produce other forms of inequity, in research capacity and research representation. These findings underscore how structural inequities in research resources must be addressed for diversity to be achieved in both research sites and research participants

Diversity (politics · Inclusion (mineral · Limiting · Political science · Public relations · Representation (politics · Social science · Sociology · Ethics in Clinical Research · Health disparities and outcomes · Health Systems, Economic Evaluations, Quality of Life