“For other diseases with a single gene origin, this may be a treatment option in the next 5-10 years. I wish it could be sooner, but our regulatory systems are antiquated.”
I believe that a person who has nothing to lose should have the right to sign a waiver on an experimental drug that absolves everyone involved, blanket, period. But the system doesn’t work that way.
Agreed. I think this is an essential reform.
There are many bioethicists who think that such a practice would recapitulate the Tuskeegee Experiment on a large scale. IMO, they are elitist jerks, and should not stand in the way of a patient getting treatment that could prolong healthy life.
But then, I think the entire War on Drugs has been a catastrophic failure, so my views are not in the mainstream.