My husband tested positive for Li-Fraumini just last month. My question/concern is about my 3 adult children (ages 23, 22, 20) and whether or not they should get tested. Does anyone have anything to share about the pro’s and cons of getting tested? I have already talked to a genetics counselor and gotten their viewpoint. I’d like to hear from the families that have chosen to get tested and if there are any issues that I should be aware of.
One of the 3 children is on Title 19 and the other 2 are private insurance. Some of my concerns are about disclosure and discrimination and how to handle insurance companies and employers. I do know about GINA. Has anyone had issues/problems since GINA was passed?