Ethics, Genetics and Alzheimer Disease

This project addresses ethical and policy issues regarding current genetic susceptibility testing for late-onset Alzheimer disease (AD). It also addresses ethical aspects of ongoing autosomal dominant testing in families with early-onset AD. The project's Community Advisory Board and National Study Group will take up these tasks: examine current testing developments in AD genetics, their presymptomatic applicability, and clinical usefulness; consider costs of testing, potential testing pool, and justice in access to testing; address potential impact of susceptibility testing on private long-term care insurance industry; develop ethics guidelines for apolipoprotein (APOE) susceptibility testing and APP autosomal dominant mutation testing; and develop recommendations for the Alzheimer's Association in ensuring public understanding of test developments. In addition, a pilot questionnaire study of population attitudes toward APOE susceptibility testing, to be implemented in Chicago, is included. As the introduction to this proposal indicates, this project is now urgent and timely, and proceeds in collaboration with the National Alzheimer's Association.