Benefits and Risks of Genetic Testing For Family Members of People Who Have or Had ALS

If you have a strong family history of ALS (two or more individuals with ALS in your family), this might increase your chance of getting ALS or passing it on to your children. If you have or had a family member with ALS, you may want to get a genetic test to learn if you have any genetic variants that increase your chance of getting the disease. Genetic testing comes with many benefits, but also some risks, and you may feel it is not right for you. Below, we highlight some of the main medical, psychological, social, and legal benefits and risks of getting a genetic test. We encourage you to speak to a genetic counselor to learn more.

Benefits

Medical Benefits: If you find out you have a specific ALS-associated mutation, you might be able to join a clinical trial that could lead to a better outcome for you or people who have ALS in the future. 

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

Financial Benefits: Finding out that you will likely get ALS early on will enable you to make choices related to future finances for you and your family. It can impact the insurance coverage you choose, timing for stopping work, and long-term lifestyle choices such as a single-story home rather than a multi-level. It may also allow for financial legacy planning for your family. 

Psychological Benefits: Many people who seek out genetic testing believe that knowledge is power. If it turns out you do not have any mutation that is strongly associated with ALS, you might be relieved that you are unlikely to develop the disease. If you test positive, the certainty might bring relief. Participating in a clinical trial can be empowering and having a clearer picture of your future may provide a level of understanding and ability to plan.

Risks

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.

Legal Risks: When someone gets a genetic test, they might be opening themselves up to discrimination. In the U.S., the law protects against genetic discrimination in health insurance and employment, but not in disability, long term care, or life insurance. We recommend securing disability, long term care, and life insurance prior to getting a genetic test. Learn more here

Psychological Risks: Genetic testing can cause fear, anxiety, and depression, triggered by concern for yourself and your family. Waiting for results is often an emotionally challenging time. Genetic testing results can create strain in marriages and among families. Your results can reveal information about your chance of getting ALS. Also, your results may affect family planning, for example, if you carry a mutation that greatly increases the chance of your children getting ALS. 

Download Risks and Benefits List

Receive Free Genetic Counseling

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

Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic counseling and testing to people with ALS and their families at no charge. For more information about genetic counseling or how to find a counselor in your area, please visit the National Society of Genetic Counselors at www.nsgc.org. But before you schedule your first appointment, talk to your doctor to get answers to your initial questions and to get started. 

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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