Alzheimer's disease biomarker disclosure in African Americans and Whites – Personal and programmatic consequences of knowing ATN status

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PROJECT SUMMARY The ability to detect biological markers of Alzheimer's disease (AD), including beta-amyloid plaques and neurofibrillary tangles, using neuroimaging and spinal fluid procedures has shifted research towards symptom prevention and trials of disease-modifying therapies during the preclinical stage. Although AD is evolving from a clinical to a biomarker-based diagnosis characterized by amyloid, tau, and neurodegeneration (“ATN”), the psychological consequences of using this framework with cognitively unimpaired adults from diverse backgrounds remains unknown. Furthermore, few studies exist on AD biomarkers in African Americans, despite the increased prevalence and incidence of AD in this population. There is a critical need to understand how adults traditionally under-represented in research, such as African Americans, perceive AD biomarker-detected pathologic changes and to identify factors linked to positive (e.g., health-promoting behaviors that may reduce dementia risk) and negative (e.g., stigma and psychological distress) outcomes related to biomarker disclosure. In the absence of such knowledge, it will be difficult to develop ethical and culturally-sensitive biomarker disclosure approaches that minimize risk for negative psychological consequences. This gap, if left unaddressed, may contribute to continued difficulty recruiting and retaining African Americans into biomarker research, affecting the generalizability of those studies. The objective of this proposal is to identify personal/demographic, experiential, and AD-specific factors associated with willingness to enroll in biomarker research and subsequent likelihood for negative and positive outcomes related to disclosure. Results will be used to inform a future R01 application focused on developing and implementing ethical approaches for communicating biomarker information to a diverse population in a manner that minimizes stigma and psychological distress, empowers individuals to engage in health-promoting behaviors, and encourages enrollment and retention in AD-related research and clinical trials. This study proposes to conduct telephone-based surveys with cognitively unimpaired African Americans (n=150) and whites (n=150) enrolled in two longitudinal cohort studies, the Wisconsin Registry for Alzheimer's Prevention and the Wisconsin Alzheimer's Disease Research Center. Our specific aims are to (1) identify factors that predict willingness to enroll in research measuring and disclosing AD biomarker data and (2) identify factors linked to negative and positive outcomes related to biomarker disclosure. Upon completion of these aims, our expected outcomes are to have identified factors associated with the decision to seek or avoid personal biomarker-disclosing research and the likelihood to experience negative or positive outcomes. This in turn is targeted to provide greater inclusivity of African Americans and other marginalized groups to participate in AD biomarker research. Research shifting the diagnosis and treatment of AD to biological markers without inclusion of these groups risks continued racial disparities in AD research, resulting in lower effectiveness in developing AD therapies that successfully generalize to the whole population.