Downside: Knowing your genetic risk of developing ALS or related conditions

Keep in mind that the information you learn from genetic testing will stay with you long after you find out your results. While some people find clarity and relief in learning about their risk of developing ALS or related conditions, others would rather not know — and that’s okay.

Note that you can request that your test results be disclosed to someone else (like a relative or another health care provider) — or that your results not be disclosed to anyone, even yourself (called non-disclosure). A genetic counselor can explain all your options at your institution.

Some people find it empowering to know what obstacles they may face in the future, so they can plan ahead. Using your genetic testing results to plan for the future can give you a sense of control. At the same time, if you find out that you have a higher risk of developing ALS or related conditions, it can be hard to cope with that knowledge. Some people struggle with being aware of their risk and wondering when they might develop symptoms.

However, the pace of research has significantly increased in recent years, and there are researchers around the world working hard to learn more about ALS and related conditions every day. So even if you find out that you’re more likely to develop ALS or another related condition, new treatment options and clinical trials may be available.

As you consider genetic testing, ask yourself: Do I want to know my risk of developing ALS or related conditions? How will knowing this information affect me?