Undecided about genetic testing?
A Youngtimers Guide ・ Last Reviewed July 2, 2025
There is no right or wrong choice.
The decision to pursue genetic testing is one that you have to make for yourself. It’s difficult, complex, and very personal.
For some people, it takes years of wrestling with the decision before reaching a conclusion. For others, the decision is immediate.
If you are on the fence and feel like you are constantly changing your mind about testing, it is probably best to wait and give yourself more time to become comfortable with the decision.
There’s no rush; take as much time as you need to determine whether genetic testing is right for you.
If you’re unsure about genetic testing, you’re not alone.
Only 12% to 17% of adults in North America and Europe who have a parent with Huntington’s (an inherited neurodegenerative disease similar to FAD) seek genetic testing.¹
As new therapies show promise for treating Alzheimer’s, we may see increased motivation for genetic testing in our community.
A mental health professional may help determine whether you are emotionally ready for undertaking the testing process. Look for someone who has experience helping people with family histories of dominantly inherited diseases.
Youngtimers is here to help.
If you are still having a difficult time deciding whether genetic testing is right for you, we can help. Check out personal stories about genetic testing from other members of the Youngtimers community, or learn how you can connect with others who have faced the same decision.
Youngtimers also offers a guide called What to Expect with Genetic Testing. This guide covers things to do in preparation for genetic testing, as well as specific steps of the genetic testing process.
Sources
Anderson KE, Eberly S, Marder KS, Oakes D, Kayson E, Young A, Shoulson I; PHAROS Investigators. The choice not to undergo genetic testing for Huntington disease: Results from the PHAROS study. Clin Genet. 2019 Jul;96(1):28-34. doi: 10.1111/cge.13529. Epub 2019 May 15. PMID: 31093973.