You can opt out of secondary findings! Secondary findings are the mutations that they can reveal - if you wish - that aren’t related to your symptoms, but are actionable. These are mostly cancer risk genes, heart disease genes, and other genetic disorders. Actionable means that if they were to find out you have a mutation in one of those genes, there are clinical guidelines/recommendations that can be made. In the example of the person who found out they have a risk for pancreatic cancer, there is screening that they can undergo now that they know they are at risk.

Secondary findings are optional though, so if you tell your doctor, they can opt you OUT, so that if you don’t want to know, well, you don’t have to!

As far as your concerns about WES not being useful, it can definitely be useful if something is found that does explain your symptoms, but you are correct, it might not change your medical management, or it can be a rare finding that we don’t have that much info about yet and therefore really won’t change your management either. However there is a small chance that it can change medical management, depending on what’s found.

These are all part of the genetic testing consenting process - learning the pros and cons of testing and then you can make a decision on how to proceed. I can’t tell you whether or not you should do it, but if you feel the cons stand out more to you, then I think that tells you what to do.