Our July expert is Scott Roberts, PhD, Clinical Psychologist and Associate Professor, Department of Health Behavior & Health Education at the University of Michigan School of Public Health.
Dear Dr. Roberts,
My father recently enrolled in GeneMatch, a new Alzheimer’s Prevention Registry program. He did a cheek swab and is waiting to be “matched” with appropriate studies. What are the next steps for my father? How can he get the results of the genetic screening so he’ll know if he carries the gene that increases the potential for Alzheimer’s disease?
I’m always encouraged to hear that people are seeking opportunities to get involved in research to prevent Alzheimer’s disease. Truly, this can only be accomplished if people like your father become involved in Alzheimer’s research studies and prevention trials.
For background, GeneMatch is open to people ages 55-75 who live in the United States and don’t have a diagnosis of cognitive impairment, such as mild cognitive impairment, or Alzheimer’s disease.
GeneMatch begins with testing the check swab submitted by your father, and others, for a specific gene called apolipoprotein E (APOE). One version of the gene increases the likelihood of developing Alzheimer’s disease, but doesn’t guarantee it will happen.
The GeneMatch team will match your father’s genetic results to ongoing Alzheimer’s prevention studies. If there are research studies for which he’s eligible, the teams involved in those studies may contact your father at some point. Of course, if he is contacted, your father is under no obligation to pursue any of the studies.
While GeneMatch doesn’t share genetic information directly with participants, the researchers who manage the individual studies may offer participants the opportunity to learn their APOE results. Again, if that happens, your father can decide whether or not he wants to learn his genetic test results. Some people are interested in their results because they are curious about their genetic risk and believe that test results could help inform their future plans. Others would rather not know because they believe the information could be distressing and of no immediate benefit to their health.
Finally, while you didn’t ask, I think you probably will feel better knowing that GeneMatch keeps all information safe, private and secure.
Thank you again for your question about GeneMatch, Liam. And my thanks to your father for getting involved in the drive to end or prevent Alzheimer’s disease.