Alzheimer's Foundation of America

Foundation of America

Alzheimer’s Foundation of America Advises Consumers: Be Informed before Using an At-Home Genetic Testing Kit this Holiday Season

NEW YORK (November 21, 2018)- With the growing popularity of at-home genetic testing kits as holiday gifts, the Alzheimer’s Foundation of America (AFA) is advising consumers about what to know before taking a genetic test to learn health information.

At-home genetic testing kits provide information about ancestry and, potentially, genetic risk for medical conditions.  Use of the kits is growing; one company reportedly sold an estimated 1.5 million kits from Black Friday through Cyber Monday in 2017.  However, there are potential longer term implications individuals should consider.

“Genetic testing kits are a popular gift, but the test results can have implications that last long after the holidays,” said Lori Frank, PhD, a member of AFA’s Medical, Scientific and Memory Screening Advisory Board.  “As with any health decision, consumers should have the right information before deciding to take a genetic test.”

AFA advises consumers of the following before getting a genetic test:

  • Be informed: Genetic testing has potential positive and negative impacts. “Some people find the results upsetting and are concerned about the emotional impact to relatives with similar genetic risk, while others feel empowered to proactively take better care of their own health.  It’s important to consider all impacts beforehand,” said J. Wesson Ashford, MD, PhD, AFA’s Medical, Scientific and Memory Screening Advisory Board Chair.
  • Consider genetic counseling: Genetic counselors are experts trained to explain genetic testing, answer questions, interpret test results and refer you to other healthcare providers and support services as necessary.
  • Understand the difference between “risk” and “certainty”: These tests only show risk for developing a condition; they’re not a diagnosis.  A test showing you have genes associated with elevated risk of Alzheimer’s disease doesn’t mean you will definitely develop Alzheimer’s. Similarly, if test results show no elevated genetic risk based on the genes tested, you still may be at risk for Alzheimer’s based on other genes or causes.
  • Know the privacy implications: Like any sensitive information, genetic test information may be susceptible to unintended disclosure.  Ask questions about how the company secures customers’ genetic information and whether the information is shared with other parties.   

AFA and its Medical, Scientific and Memory Screening Advisory Board published recommendations in the Journal of Alzheimer’s Disease, and a related statement about ways to better protect consumers. More information on both can be found here.