ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research

ELSIcon2022 • Paper • June 1, 2022

Nicole Foti, Emily Vasquez, Caitlin McMahon, Sandra Soo-Jin Lee, and Janet Shim on behalf of Ethics of Inclusion Study Team

There is a diversity deficit in biomedical research, especially evident in genomic databases, that threatens the generalizable pursuit and equitable translation of precision medicine research (PMR). Funders have responded with mandates for inclusion of diverse participants, prompting PMR researchers to recruit in new communities, including those that are socioeconomically disadvantaged, medically underserved or that have historically fraught relationships with the biomedical community. Based on document analysis, interviews and observations of five PMR studies in three federally funded consortia, we find that PMR investigators and research staff recruiting in these communities think about the research-care divide in traditional ways (e.g., return of results), but also in ways that trouble typical notions of research and care. Many express concern over the precarious social circumstances of individuals targeted for recruitment, and a sense of obligation to address vulnerability in communities as part of the research process. This has prompted the question of a broader definition of responsibility, including addressing immediate non-clinical needs of individual participants, such as food and housing conditions, as well as action at the community- and societal-level to promote health and wellbeing. PMR researchers describe frequently grappling with where and how to draw the line between their “research” projects and the need for forms of service and advocacy. As PMR researchers trouble the research-care divide, they are doing so in ways that beg a re-examination of the social contract underlying biomedical research and the diverse communities whose participation it seeks and increasingly mandates.