Anyone interested in better understanding their risk for FTD can meet with a genetic counselor. You can meet with a counselor individually or with a family member or friend. In some cases, the genetic counselor may recommend genetic testing to help clarify your risk, but genetic testing is never a required part of genetic counseling.
The Value of a Genetic Counselor
Whether you have a personal or family history of FTD, or whether past misdiagnosis could potentially be masking one, AFTD strongly recommends that you consider genetic counseling as a first step to answering questions about your genetic status.
A genetic counselor can evaluate the likelihood that your or your family’s condition has a genetic cause. A genetic counselor can help you think through the benefits and risks of genetic testing and ways to talk to family members about genetic testing, privacy concerns, and more.
The Goal of a Genetic Consultation
During an initial genetic counseling consultation, the genetic counselor will try to understand the individual’s motivations and needs for the visit. For example: Is the individual seeking genetic counseling because they are concerned about their own health? Are they planning a pregnancy? Are they trying to understand the likelihood that their (or a loved one’s) FTD has a genetic cause, making them eligible for research studies?
Considering Family History
Once the genetic counselor understands an individual’s goals for the consultation, they will collect information about personal and family history of FTD and related conditions. Talking to family members in advance will help to gain as much information as possible as about a family’s health history. If available, medical records will also be reviewed.
Providing a Risk Assessment
Based on a careful review of medical records, as well as consideration of the personal and family history provided, the genetic counselor will provide their risk assessment, identifying the likelihood that there is a potential genetic cause for the diagnoses or symptoms described in the family.
For individuals who are interested in genetic testing, the genetic counselor will discuss the risks and benefits of testing, and identify the specific test that can ensure the most accurate results possible. When considering which genetic test to recommend for your physician to order, the genetic counselor will take into account which genes are included on the test panel. There are more than 10 genes associated with FTD, with the three most common being C9orf72, GRN (progranulin), and MAPT. For more information about the genetics of FTD, click here.