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Comment by GenerWork | Hacker News Reader

My hot take is that if you have a disease like ALS that's pretty much always fatal, you should be able to skip whatever safeguards the FDA has setup as long as you're informed that this medicine could hurt you or even kill you before the disease does.

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Seconded, I think that's the most rational approach. I also think the patients should be thoroughly coached by medical professionals or maybe even be required to take a required orientation session on potential down-sides so that the risk is truly emphasized. We consume some pretty harmful things on a daily basis - alcohol and tobacco at the top of the list - and those are perfectly legal for people to decide whether or not they want to put into their bodies. It's not a huge leap to give people that same personal choice when it comes to experimental drugs that might give them even a small chance of surviving a terminal illness.

Its a nice sentiment, but it ends with desperate families spending all their savings on an ayahuasca-carrot juice cleanse to try and save their loved one.

Still need some kind of process to weed out the grifts.

Is it wrong for desperate patients to spend all their savings on ayahuasca-carrot juice? I don't think it's very ethical of the juice seller to exploit patients by selling them hope, but it doesn't feel like it should be illegal, since the patient does get some value out of the purchase, even if it's just (false) hope

What if for example they get conned into spending their life savings on fake treatments that exist today and then have nothing left when a promising legitimate treatment is developed six months from now?

And what about their heirs? What if they get conned into wasting away wealth that they could have passed down based on a false idea that it could help them be cured?

Not to mention that it hurts society as a whole to allow money to flow to grifters whether or not the subjects of the con successfully get false hope out of it.

Yes, it is unequivocally wrong for us to allow desperate people to get scammed. I almost can't believe I have to say that, but I've been on the internet long enough to know better.

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