Disclosure of Genetic Risk for Alzheimer's Disease

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DESCRIPTION (provided by applicant): Understanding how people respond to genetic risk information will be critical in allowing discoveries from genomic research to be effectively translated into clinical care. Alzheimer's disease (AD), for which one form of the apolipoprotein E (APOE) genotype serves as a significant risk factor, provides an instructive paradigm in which to examine the process and impact of genetic testing for a common, complex disease. The parent grant in this application, the NHGRI/NIA-funded Risk Evaluation and Education for Alzheimer's Disease (REVEAL) Study, is a multi-site, randomized clinical trial of a genetic counseling and education program that includes disclosure of APOE genotype information. This clinical trial examines the psychological and behavioral impact of the counseling and education program on a racially diverse sample of first-degree relatives of people with AD. We will expand upon the already novel design and content of the REVEAL Study through several methodological innovations. First, we will use the Roter Interaction Analysis System (RIAS) coding method to analyze over 225 audiotaped REVEAL risk disclosure sessions. The RIAS has been utilized successfully in many clinical contexts but has never been applied to actual genetic risk disclosure sessions. Its use will permit for rigorous analysis of the process of risk disclosure for AD susceptibility. Second, we will examine physicians as providers of risk disclosure, in order to explore provider differences in provision of genetic risk assessment. Given these additions to the REVEAL Study design, we will be able to: 1) examine how the quality of provider-patient interactions during risk disclosure sessions predicts key patient and provider outcomes following genetic risk assessment; 2) examine differences in provider-patient interactions between risk disclosure sessions in which negative vs. positive test results for the APOE-e4 genotype are disclosed; and 3) explore differences in provider-patient interactions based on both patient and provider characteristics (e.g., race, provider profession). Study findings will inform the development and implementation of genetic risk assessment programs across numerous disease contexts.