It doesn't really matter whether you would or would not take the gamble; it depends on whether the FDA would be willing to let you.

(I'm not saying this as some kind of rrrgh-gubmint-bad thing. It's pretty normal for the government to have authority over what gambles are acceptable to offer in what circumstances, and which ones are exploitative and detrimental to even offer; this is the logic behind, for instance, regulations of actual gambling.)

Yes of course, but think about gene therapy for far less intrusive health issues.

If more common and widespread health problems are tackled with gene therapy and we wouldn't know the consequences long term (we really don't) then this aspect becomes far more problematic.

Like you, I would also take the gamble if it's a Hail Mary attempt at surviving or making a somewhat normal life possible. But that's not the point I was trying to tackle.