Genetic Counseling
AFTD strongly recommends genetic counseling as a first step to consider if genetic testing is the right choice for you. You can meet with a genetic counselor individually or with a family member or friend to review your family history, address concerns, choose the most appropriate testing strategy, and help you consider how the results could impact you and your family.
Diagnostic and Predictive Genetic Testing
When a person has symptoms of FTD, genetic testing can confirm the diagnosis is correct, potentially open research opportunities, and offer additional insights for extended family. This is “diagnostic testing.”
When a person has a family history of FTD but has not shown symptoms, they can undergo what's known as “predictive testing.” Predictive testing allows a person to gain insight into their future. While this information may help them to take proactive steps, the decision to undergo predictive testing is highly personal, with important ramifications for the person and their extended family. Predictive testing can have significant emotional, psychological, relational, and legal consequences. Genetic counselors play an integral role in ensuring the decision to pursue predictive testing is carefully considered.
What to Expect from Genetic Counseling
Finding a Genetic Counselor
There are several ways to find a genetic counselor to meet your needs. It is important to find a counselor in your state, as regulations vary across the U.S. This directory of genetic counselors with expertise in FTD, available to download as a PDF, lists active counselors by state.
For Spanish speakers, the National Society of Genetic Counselors offers a Spanish-language website, including a Spanish version of its "Find a Genetic Counselor" feature.
Watch AFTD's Webinar "An Overview of FTD Genetics and the Role of Genetic Counseling"
Watch AFTD's Webinar "How to Find a Genetic Counselor"
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