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Strategies of inclusion: The tradeoffs of pursuing “baked in” diversity through place-based recruitment

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Listed:
  • Shim, Janet K.
  • Bentz, Michael
  • Vasquez, Emily
  • Jeske, Melanie
  • Saperstein, Aliya
  • Fullerton, Stephanie M.
  • Foti, Nicole
  • McMahon, Caitlin
  • Lee, Sandra Soo-Jin

Abstract

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.

Suggested Citation

  • Shim, Janet K. & Bentz, Michael & Vasquez, Emily & Jeske, Melanie & Saperstein, Aliya & Fullerton, Stephanie M. & Foti, Nicole & McMahon, Caitlin & Lee, Sandra Soo-Jin, 2022. "Strategies of inclusion: The tradeoffs of pursuing “baked in” diversity through place-based recruitment," Social Science & Medicine, Elsevier, vol. 306(C).
  • Handle: RePEc:eee:socmed:v:306:y:2022:i:c:s0277953622004385
    DOI: 10.1016/j.socscimed.2022.115132
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    1. Sam S Oh & Joshua Galanter & Neeta Thakur & Maria Pino-Yanes & Nicolas E Barcelo & Marquitta J White & Danielle M de Bruin & Ruth M Greenblatt & Kirsten Bibbins-Domingo & Alan H B Wu & Luisa N Borrell, 2015. "Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled," PLOS Medicine, Public Library of Science, vol. 12(12), pages 1-9, December.
    2. Alice B. Popejoy & Stephanie M. Fullerton, 2016. "Genomics is failing on diversity," Nature, Nature, vol. 538(7624), pages 161-164, October.
    3. Eric D. Green & Chris Gunter & Leslie G. Biesecker & Valentina Francesco & Carla L. Easter & Elise A. Feingold & Adam L. Felsenfeld & David J. Kaufman & Elaine A. Ostrander & William J. Pavan & Adam M, 2020. "Strategic vision for improving human health at The Forefront of Genomics," Nature, Nature, vol. 586(7831), pages 683-692, October.
    4. Timmermans, Stefan & McKay, Tara, 2009. "Clinical trials as treatment option: Bioethics and health care disparities in substance dependency," Social Science & Medicine, Elsevier, vol. 69(12), pages 1784-1790, December.
    5. Fisher, J.A. & Kalbaugh, C.A., 2011. "Challenging assumptions about minority participation in US clinical research," American Journal of Public Health, American Public Health Association, vol. 101(12), pages 2217-2222.
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