Strategies of inclusion

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

Bibliographic Data

ID4592795
AuthorsJanet K Shim (0000-0002-4597-7961, University of California, San Francisco, corresponding author), 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)
Year2022
Volume306
Pages115132
Publication date2022-08-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSocial Science & Medicine (JOURNAL)
Journal identifiersISSN: 0277-9536 • E-ISSN: 1873-5347
PublisherElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2022.115132
PMID35728460
OpenAlexW4282929953
LanguageEN
Citations received6
References cited27

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