Benefits and Risks of Genetic Testing for People Living with ALS

Genetic testing for ALS looks for changes, also called mutations, in genes that have been linked to the disease. Genetic testing comes with many potential benefits, but also some potential drawbacks, and may not be right for you. 

Below, we highlight some of the main medical, psychological, social, and legal benefits and risks of getting a genetic test. A genetic counselor can help you weigh these (and other) pros and cons as you decide whether or not to get tested. 


Medical Benefits: Your genetic test results can help you find a clinical trial you may qualify for, which could lead to a better outcome for you or people who have ALS in the future. The results could also enable your doctor to prescribe a gene-targeted therapy (if and when they are approved by the FDA).  

Family Planning Benefits: Understanding your genetic background can help you make decisions about family planning. Depending on your age and stage in life, you can work with a counselor or fertility specialist to develop a plan to reduce the chance that an ALS-linked gene mutation gets passed down to your children. 

Psychological Benefits: Genetic testing can provide a sense of relief from uncertainty and an opportunity to plan for the future.  


Physical Risks: The physical risks associated with getting a genetic test are very small. All the test requires is a blood sample or, in some cases, a saliva sample or cheek swab. 

Legal Risks: When someone gets a genetic test, they might be opening themselves up to discrimination. In the U.S., there is a law that protects against genetic discrimination in health insurance and employment, but not in disability, long-term care or life insurance. This means that insurance companies can set higher premiums or deny coverage based on genetic information. We recommend securing disability, long-term care and life insurance prior to getting a genetic test. 

Psychological Risks: Genetic testing can cause people to feel angry, depressed, anxious or guilty. Genetic testing results also can strain relationships as your results can reveal information about your family members’ chance of getting ALS and may affect family planning. 





Free Genetic Testing and Counseling with ALS Identified

The ALS Association believes that people living with ALS and their families must have the right to access genetic counseling and testing, education about clinical genetics in ALS, and safeguards against genetic discrimination. 

ALS Identified, a program sponsored by Biogen and offered through the diagnostic company Invitae, offers free genetic testing and post-test counseling to people with ALS and their families. 

For more information about ALS Identified and how to participate, click here

Learn more about the ethical considerations of ALS genetic testing in a video from experts through our collaboration with the International Alliance of ALS/MND Associations. 

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