Downside: Limitations of genetic testing

Researchers have identified many genes that cause or increase people’s risk for developing ALS or related conditions, but we still have a lot to learn. At this point, genetic testing can find some of the genetic causes of ALS — but not all of them.

In some situations, you could go through genetic testing and not get clear answers about whether you or your family members are likely to develop ALS or related conditions in the future. This is called an inconclusive result. Your chances of getting an inconclusive result depend on several factors (like whether there’s a known genetic cause of ALS in your family). Your genetic counselor can help you better understand this based on your unique situation.

The good news is that researchers continue to identify new genetic ties to ALS every year, and they’re working hard to learn more about the genetic causes of ALS and develop new treatment options.

It’s also helpful to understand that experts know more about some genetic differences than others. With certain genetic differences, genetic counselors can more accurately predict your chances of developing ALS.

Finally, if your test results show that you’re likely to develop ALS or related conditions in the future, there’s no way to tell exactly when you may develop the disease or what symptoms you may experience. And even if genetic testing indicates that you’re very likely to develop ALS, it’s still possible that you might not develop the disease.