Finding a genetic counselor
A Youngtimers Guide ・ Last Reviewed Mar 22, 2024A genetic counselor is a healthcare professional with specialized knowledge and training about genetic diseases. They will help assess whether you’re at risk for familial Alzheimer’s disease (FAD) and if so, they will help you decide whether genetic testing is right for you.
You can find genetic counselors through the National Society of Genetic Counselors ⧉ or your region’s Alzheimer’s Disease Research Center ⧉.
The ideal genetic counselor will have experience working with FAD or Huntington’s disease (another inherited autosomal dominant neurodegenerative disorder). That’s why another good resource for finding genetic counselors is at a Huntington Disease Centers of Excellence. Find an HDSA Center of Excellence ⧉.
In addition to having experience working with autosomal dominant neurodegenerative disorders, the ideal genetic counselor will follow the Huntington’s Disease genetic testing protocol ⧉ and will accommodate any privacy concerns you may have.
If you have trouble finding a genetic counselor, Youngtimers can help. Contact us for more information.
Do I have to go through a genetic counselor to get genetic testing?
Generally speaking, yes. Seeking out a genetic counselor is the main way to get genetic testing.
On occasion, people may find ways of getting genetic information without going through a genetic counselor. Unfortunately, this can result in inaccuracies and traumatic experiences. Some members of the Youngtimers community who have gotten genetic test results without the help of a genetic counselor have received false negative test results, followed by the difficult revelation that they were, in fact, mutation carriers.
If I plan to participate in a study or trial, do I need to find a genetic counselor?
No. Several studies and trials provide genetic testing for FAD and will help find a genetic counselor for you as a part of their process.