Genetic Testing — Understanding Your Options
Understanding your options, the decision, and how to navigate it as a family.
If FTD runs in your family, at some point the question comes up: should I get tested? It’s not a medical question. Or at least, it’s not only a medical question. It’s a deeply personal one that touches who you are, how you think about the future, and what your family can handle right now. There is no right answer. There’s only your answer, made at your pace, with the support you need.
What genetic testing is.
Genetic testing for FTD is a simple blood test. The lab checks for mutations in three genes: MAPT, GRN, and C9orf72. These are the genetic causes of most familial FTD. The test itself is straightforward — a phlebotomist draws blood, you get results in a few weeks. The decision is not.
Some people choose to get tested.
Here’s why they do:
- Not knowing feels heavier than any result
- They want to plan ahead — legally, financially, with their career and care preferences
- They want to understand the risk for their children (50% chance for each child)
- They want to join research studies and potentially contribute to understanding the disease
- They want to start monitoring their brain health early with cognitive testing and imaging
Some people choose not to get tested.
These reasons are equally valid:
- They prefer to live without that knowledge
- No preventive drug exists yet, so knowing doesn’t change treatment
- Insurance concerns — GINA protects health insurance and employers, but NOT life insurance, disability insurance, or long-term care insurance
- The emotional toll of knowing
- Family dynamics — your test result reveals information about your siblings and parents that they may not want to know
If you’re thinking about getting tested.
Work with a genetic counselor, not just a doctor. Genetic counselors are specially trained to help you understand the test, the results, and what they mean for you and your family. Find one through the National Society of Genetic Counselors.
Major FTD centers have genetic counselors on staff who specialize in this disease:
A genetic counselor will walk you through:
- What the test can and cannot tell you
- What results might mean for your risk of FTD
- Insurance implications and privacy protections
- How to talk to family members about what you decide
Talking to your family about testing.
This conversation is often harder than the test itself. If you test positive, your siblings might have the mutation too. Your children will want to know their risk. Your parents might have known about the genetic connection but never told you.
A genetic counselor, therapist, or peer support group can help you prepare for these conversations. You can’t control how family members react or what they choose to do with information. But you can be honest about your own decision and your own needs.
The Remember Me Podcast has an episode about genetic testing that includes perspectives from people who chose to test, people who chose not to, and genetic counselors. Hearing others talk about this decision might help clarify your own thinking.