Alzheimer’s Prevention Initiative Generation Program: Development of an APOE Genetic Counseling and Disclosure Process in the Context of Clinical Trials
This article outlines the framework created by the Alzheimer’s Prevention Initiative Genetic Testing, Counseling, and Disclosure Committee for large-scale disclosure of apolipoprotein (APOE) results to study participants. The paper recommends an alternative to traditional models of genetic counseling and disclosure of APOE results in the context of Alzheimer's disease prevention trials. These recommendations include that researchers give comprehensive standardized counseling and disclosure of APOE results efficiently, safely, and effectively in the context of Alzheimer’s disease prevention trials. The committee created a process that includes: requirements of APOE testing and reports, psychological readiness assessment, determination of Alzheimer’s disease risk estimates, guidance for identifying providers of disclosure, pre-disclosure education, APOE counseling and disclosure session materials, APOE counseling and disclosure session flow, and assessing APOE disclosure impact.
Langlois CM, et al. Alzheimer's Prevention Initiative Generation Program: Development of an APOE genetic counseling and disclosure process in the context of clinical trials. Alzheimer’s & Dementia. 2019;5:705-716. doi: 10.1016/j.trci.2019.09.013.