ELSIcon2022 • Paper • June 2, 2022
Johanna Crane, Carolyn Neuhaus
Research partnerships with community health centers serving ethnically and economically diverse communities present an opportunity to diversify genomics research. Examples include involving federally qualified health centers in the All of Us Research Program and Mayo Clinic’s partnership with Mountain Park Health Center in Arizona within the Return of Actionable Variants Empirical Study. These partnerships are ethically well-justified: there is a need to diversify genomics research, and community health centers serve patients from historically underrepresented groups.
As new sites for genomics research, community health centers have not been the focus of ELSI inquiry, either. Drawing on preliminary insights from our study of federally qualified health centers’ involvement in <em>All of Us</em>, we stress the importance of investigating community health partnerships in genomics research. Questions should be tailored to this unique context: What are the potential benefits and burdens for community health centers engaging in genomics research partnerships? Are the benefits and burdens of research balanced equitably among partners? How are research questions, protocols, and/or operating procedures negotiated within these partnerships? Do research institutions have ancillary care obligations to their partners, especially un/underinsured participants? What does 'partnership' mean to research institutions, community health centers, and patient-participants?
Understanding how institutions with unequal funding and distinct missions navigate the tricky terrain of collaboration can help us identify the ethical challenges and dilemmas of partnership in practice. These insights can inform efforts to forge just and equitable genomics research partnerships with community health centers, and to deliver the benefits of genomics research to diverse populations.