Genetic Risk of Alzheimer's Disease: Three Wishes Now That the Genie is Out of the Bottle.

Frank L1, Wesson Ashford J2, Bayley P2, Borson S3, Buschke H4, Cohen D5, Cummings JL6, Davies P7, Dean M8, Finkel SI9, Hyer L10, Perry G11, Powers RE12, Schmitt F13.

Author information

Abstract

The availability and increasing popularity of direct-to-consumer genetic testing for APOE4 status led the Alzheimer's Foundation of America Medical, Scientific and Memory Screening Advisory Board to identify three critical areas for attention: 1) ensure consumer understanding of test results; 2) address and limit potential negative consequences of acquiring this information; and 3) support linking results with positive health behaviors, including potential clinical trial participation. Improving access to appropriate sources of genetic counseling as part of the testing process is critical and requires action from clinicians and the genetic testing industry. Standardizing information and resources across the industry should start now, with the input of consumers and experts in genetic risk and health information disclosure. Direct-to-consumer testing companies and clinicians should assist consumers by facilitating consultation with genetic counselors and facilitating pursuit of accurate information about testing.