I have close friends that has quite serious genetic diseases in the family, ones they passed on to their children too. In that, they are in and out of the hospital all the time. And yes, the disease is degenerative.

I know that they went out of their way to a company that does not store genetic info for their sequencing.

In talking with them, they are also very against any form of this screening. The risks of the disease are very bad, but they feel on a population level that the risks of abuse by insurances or governments are much higher, per what they have told me.