Genetic testing for people living with ALS and their families

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Potential benefits of genetic testing for people with ALS and their families

Genetic testing may help you and your doctor have a deeper understanding of your ALS, providing you with more information about your diagnosis. Genetic testing may:

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reveal if there is a genetic component to your ALS

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help family members understand if they may be at risk for ALS as well

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provide information as to whether the mutation(s) present are associated with the rate of progression of the disease

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help you make more informed life choices, including long-term care needs and family planning

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better inform clinical care with findings from ongoing clinical trials

A genetic test may help you gain a deeper understanding of your ALS

Genetic counseling is recommended for anyone getting a genetic test for ALS. A genetic counselor specializes in helping people understand their genetics. Before testing, the genetic counselor can discuss the potential risks and benefits of genetic testing. After testing, they can help you understand the results and answer questions about how the results might impact you, your family, and family planning.

Talk to your doctor about genetic counseling before getting tested.

Is genetic testing right for you and your family?

Before you get genetic testing, please consider the following:

  • Genetic testing can provide limited but important information about ALS. If you have ALS, the results may help to inform your prognosis. For family members without ALS, genetic testing may help to determine if they are at increased risk for developing ALS, though it cannot predict when or if a person without ALS may develop the disease
  • The physical risks associated with genetic testing are small
  • Many of the risks associated with genetic testing involve the emotional, social, or financial consequences of the test results. People may feel confused, anxious, sad, or even guilty about their results. In some cases, genetic testing may create stress or strife within a family because the results can reveal information about other family members in addition to the person who is being tested. The possibility of genetic discrimination in employment, as well as for disability or life insurance, can also be a concern
  • Before choosing to undergo genetic testing, you should consider the implications of the results on your family members and your eligibility for disability, health, and/or life insurance, as well as on family planning and reproduction choices. Future planning decisions in areas such as health care, advance directives, and estate and financial planning should also be considered
  • In addition to discussions with your doctor, a genetic counselor can further explain the benefits, risks, and limitations of genetic testing. It is important that you weigh these factors before deciding whether to undergo genetic testing at this time

A genetic test may help you gain a deeper
understanding of your ALS.