Trust Thyself: How Older Black and White Adults Consider Alzheimer’s Disease Research Participation

Abstract

Older Black or African Americans (B/AA) are under-represented in human research including studies related to Alzheimer’s disease (AD), despite their higher risks for AD and related conditions. Mistrust is often cited as a major barrier towards greater B/AA engagement and recruitment, but it is not known how such mistrust can be overcome. The United States Public Health Service Syphilis Study at Tuskegee and the case of Henrietta Lacks contribute to such mistrust, but prior studies have found inaccurate knowledge of these ethical violations among older B/AA adults. We surveyed 158 older B/AA and 216 older non-Hispanic White adults’ knowledge of the USPHS Syphilis Study and Lacks, their perception of health and research equity, and the relative importance they assign to factors (internal motivation, external counsel) commonly considered before AD research participation. Compared to White respondents, B/AA respondents were more likely to report accurate as well as inaccurate details about the Syphilis Study, less equity in AD research (proportional OR 2.10, 95%CI=1.43-3.09), and less equity in healthcare at researcher-affiliated academic medical centers (AMCs, proportional OR=2.63, 95%CI=1.73-3.98) even if they believe they can receive high quality care there themselves. Race did not greatly influence the relative importance of information sources when considering research participation, but knowledge of the Syphilis Study (accurate or inaccurate) from B/AA respondents was also associated with a shift in trust from community leaders (e.g., clergy) to one’s own past experience at AMCs. These findings suggest that positive personal healthcare experience can potentially enhance B/AA research participation even if it does not improve perception of inequity in research and healthcare.