Experiences of Discrimination and Interest in Alzheimer’s Disease Predictive Testing in the Health and Retirement Study

Abstract

AbstractBackgroundRapid developments in Alzheimer’s disease (AD) biomarker research suggest predictive testing may soon become a feasible option available to the public. Future reduction of racial and ethnic disparities in AD requires understanding of potential differences in drivers of interest in AD diagnostic testing. Experiences of discrimination may influence attitude toward AD testing, particularly among racially and ethnically minoritized populations. This study examines whether everyday or lifetime discrimination shapes interest in AD predictive testing.MethodData were collected from 1,472 participants in the 2010 and 2012 waves of the Health and Retirement Study who answered a module on interest in receiving a free test that could tell whether they would develop AD in the future, along with measures of Everyday Discrimination and Lifetime Discrimination. Logistic models were controlled for deciles of propensity scores (estimated using demographic and socioeconomic variables) and odds ratios were re‐expressed as risk differences (RD). The RD is the difference in the probability a person expressed interest in receiving a future AD predictive test based on past experiences of discrimination.ResultThe mean age of the sample was 67 (SD = 10.2), 65.9% were white, and 80% endorsed interest in AD predictive testing. Most (64.1%) participants indicated experiencing everyday discrimination in at least one domain, and 34.8% experienced major lifetime discrimination in at least one domain. Those interested in predictive testing were younger (66 vs 70 years) and more likely to be Black (20% vs 15%) or Latinx (14% vs 8%) than participants uninterested in testing. The probability of wanting an AD test was not associated with discrimination experiences for Black (RD everyday discrimination = 0.104, p = 0.285; RD lifetime discrimination = ‐0.038; p = 0.626) or Latinx (RD everyday discrimination = ‐0.003, p = 0.974; RD lifetime discrimination = ‐0.053; p = 0.692) participants.ConclusionDespite historical and contemporary experiences of discrimination, Black and Latinx individuals express interest in AD testing. This finding implicates structural and systemic barriers, such as systemic racism and institutional gaps in access to clinical research, as likely explanations for underrepresentation of racially and ethnically minoritized persons in research on AD testing.