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J Alzheimers Dis. 2018;66(2):421-423. doi: 10.3233/JAD-180629.

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

Author information

1
Health and Aging Policy Fellow/American Political Science Association Congressional Fellow; Senior Advisor, PCORI, Bethesda, MD, USA.
2
Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA, USA and War Related Illness and Injury Study Center, VA Palo Alto Health Care System, Palo Alto, CA, USA.
3
University of Washington School of Medicine, University of Washington, Seattle, WA, USA and University of Minnesota, Minneapolis, MN, USA.
4
The Saul R. Korey Department of Neurology and Dominick P. Purpura Department of Neuroscience, Lena and Joseph Gluck Distinguished Scholar in Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.
5
Department of Child & Family Studies, College of Behavioral & Community Sciences, University of South Florida, Tampa, FL, USA.
6
Center for Neurodegeneration and Translational Neuroscience, Cleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas, NY, USA.
7
Litwin-Zucker Center for Alzheimer's Disease & Memory Disorders, The Feinstein Institute for Medical Research, Manhasset, NY, USA.
8
Texas Tech University Health Sciences Center, Internal Medicine, Amarillo, TX, USA.
9
Department of Psychiatry, University of Chicago Medical School, Chicago, IL, USA.
10
Department of Psychiatry, Mercer School of Medicine, Macon, GA, USA.
11
Brain Health Consortium, Department Biology and Chemistry, University of Texas at San Antonio, San Antonio, TX, USA.
12
Departments of Pathology and Psychiatry, University of Alabama School of Medicine, Birmingham, AL, USA.
13
University of Kentucky, Sanders-Brown Center on Aging, Lexington, KY, USA.

Abstract

The availability and increasing popularity of direct-to-consumer genetic testing for the presence of an APOE4 allelle 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.

KEYWORDS:

APOE; genetic risk; genetic testing; late-onset Alzheimer’s disease

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