Building Trust to Enhance Diversity in Aging Research

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PROJECT SUMMARY/ABSTRACT The UMB NIA Parent R24 entitled “Building Trust to Enhance Diversity in Aging Research” is focused on determining the most efficient and effective research recruitment and retention strategies for three underrepresented study populations. It is essential to identify factors associated with the under-representation of in research.3–5 Experiences with our community partners, especially since the occurrence of the SARS-CoV-2 public health emergency, increasingly show profound community concerns with ethical issues in research, particularly related to post-study obligations of researchers and academia and return of research resuts.6–9 Addressing bioethical concerns of historically under-represented populations requires innovative, trustworthy, and community-driven approaches . This study will focus on aging African Americans’ views on post-study obligations and views on return of research results, their ethical concerns and trust/trustworthiness in researchers and research. This investigation, related to bioethical research, is consistent with the goals/aims of the Parent grant and NIA’s mission, goals, and objectives, particularly Goal F and objectives of its Strategic Plan. The specific aims are to: Aim 1: Elicit aging African Americans’ views related to research participation for African American Aging participants and their communities and community views on post-study obligations and return of research results. ; Aim 2A: Assess how aging African Americans and community members interpret expectations for post-study obligations according to the three principles of the Belmont report.; Aim 2B: Investigate views on historical research occurrences and their influence on research participation through case studies utilizing storytelling to further determine participant views on return of results, post-study obligations and trustworthiness in Aging Research. Case studies will include: Case 1: Mrs. Henrietta Lacks for principle of respect for persons; Case 2: PHS Study of Untreated Syphilis in Tuskegee, Alabama for principle of beneficence/nonmaleficence; Case 3: Genetic etiology of aggressive behavior study in African American boys for principle of justice. Lessons learned from this project will support and inform science, clinical research and future policy development in bioethics and research ethics. The project has potential to increase the inclusion (recruitment and retention) of aging African Americans in biomedical and clinical research. This could fill an important ethical gap given the absence of formal policies on post- study care/obligations and return of results in a majority of institutions and IRBs.