When is it advisable for relatives to seek genetic counseling?

Genetic counseling for relatives of people with ALS is particularly useful when there is a case of familial ALS (FALS) or genetic ALS with a confirmed mutation. The counseling helps assess the individual risk for other family members and provides information about genetic testing, possible results, and their implications. It can be particularly relevant for first-degree relatives (especially siblings or children), as they may have an increased risk of carrying a mutation.

However, it is important that the decision for or against genetic testing be carefully considered, as the results can have psychological and social implications. For this reason, genetic counseling, testing, and the disclosure of test results for asymptomatic individuals (relatives without signs of ALS) may only be performed by specialists in human genetics or by professionals with other specialized qualifications in human genetics. The ALS Genetics Program can help establish contact with genetic specialists.