#2: Aug 5th 2017 at 1:04:49 AM
Formally declining this as it's unlikely to stay calm and on topic.
"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard Feynman
Total posts: 2
http://www.cnn.com/2017/07/28/health/charlie-gard-death/index.html
Summary: So a baby was diagnosed with an extremely rare genetic disease. His parents raised 1.3 million dollars for for an experimental treatment another doctor was willing to do via Go Fund Me, but before he could receive treatment the hospital removed life support, saying it was in his best interests. There was a legal battle, which the hospital won. I should say that as far I know they only removed it after they won.
Now, I am by no means against removing life support or even euthanasia in all circumstances, in particular if the patient signed a form indicating such a thing is preferred, but I strongly disagree with the decision of the courts. In the first place, I think the barest possibility of a healthy life strongly outweighs any consideration of suffering when it is the duration of a few days at most (he didn't have long left to live either way). Now, if if they had to endure years of extreme torment and still only have a chance of it working, they might have a point, but I don't think risk aversion deserves to be treated as sacred.
Personally, I see this sort of medical paternalism as like as moderate analog of PETA's attitude that euthanasia of animals is preferable to slight temporary discomfort. It is less offensive, but more insidious because this sort of view is everywhere.
I would add that the unnecessary caution seems vastly exaggerated if it involves a genetic disease. I suspect latent or overt technophobic sentiments are at play here.
Now, even setting aside the cultural issues, while I'm certainly fine with hospitals disallowing parents to decide that e.g. their child can't receive a blood transplant, it should never be up to the hospital to disallow parents getting their child potentially lifesaving treatments.
The strong preference some people have for death of other people when experimental medicine is involved is quite curious. How exactly do they expect science to progress if they feel experimental treatments are never worth it? I see nothing wrong with consensual experimental medicine, and if it's the only chance at life it's certainly worth it.