Trust thyself: How older black and white adults consider Alzheimer’s disease research participation

Abstract

AbstractBackgroundBlack or African Americans (B/AA) are twice as likely to develop Alzheimer’s disease (AD) but significantly under‐represented in AD research studies, particularly those involving cerebrospinal fluid and PET biomarkers. We previously did not find potential participants to reference Tuskegee Study of Untreated Syphilis (TSUS) as a common reason for non‐participation, but B/AA adults who expressed an interest in research participation were much less likely to follow through than White adults in the Atlanta area. The reason for this is not clear.MethodWe electronically surveyed 158 older B/AA and 216 older non‐Hispanic Whites from Georgia, Alabama, Pennsylvania, and Missouri to assess their trust in AD research and their local academic medical centers (AMC); motivating factors and sources of counsel for participating in a hypothetical AD research study; and knowledge of ethical violations including TSUS and the case of Henrietta Lacks.ResultCompared to White respondents, B/AA respondents were more likely to provide accurate (OR=2.51, 95%CI=1.42‐4.44 p=0.002) as well as inaccurate (OR=3.95, 95%CI=2.37‐6.56, p<0.001) details about TSUS, perceive less equity in AD research (proportional OR 2.10, 95%CI=1.43‐3.09, p<0.001), and report less equity in healthcare at researcher‐affiliated AMCs (proportional OR=2.63, 95%CI=1.73‐3.98, p<0.001) even if they themselves can receive quality care there. State of residence did not greatly influence accuracy of knowledge or perception of equity in research and healthcare. Personal or family history of dementia, altruism, support from a friend or family, and support from a trusted physician were top factors considered by both older B/AA and White adults prior to research participation. Knowledge of TSUS – not Lacks – among older B/AA adults was associated with a shift of trust from community leaders to one’s own healthcare experience at AMCs.ConclusionFamiliarity with TSUS – but not accuracy – impacted factors of mid‐ to low importance in older B/AA adults when considering research participation and, to a lesser degree, perception of healthcare equity. Positive personal healthcare experience can potentially enhance B/AA research participation even if it poorly improves perception of inequity in research and healthcare.