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Comment by jimrhods23 | Hacker News Reader

What a horrible idea. Clinical trials with no oversight or regulation of patients that may or may not even know the consequences.

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They know the consequences of not trying any risky/experimental treatment: death.

I know people willing to become guinea pigs for non-life threatening conditions (i.e back pain).

It's clear that the current approach to develop new treatments/drugs that requires billions and years or even decades of tests is not fast enough for many people.

With the amount of lawsuits in the US for people that are willingly harming themselves or abusing drugs: Cigarette companies still getting sued for smokers dying of cancer..even though it's been known for 50 years that it causes cancer and Big Pharma getting sued for the Opiod crises means that this will never happen here until we have major tort reform and an assurance that a company can't be sued in any court if someone dies as a result of taking untested treatments.

"It's clear that the current approach to develop new treatments/drugs that requires billions and years or even decades of tests is not fast enough for many people"

It takes years of testing because the risk if health or death is too great. It's foolish to think that allowing anyone to be a human guinea pig for untested/unfinished treatments will result in any less deaths or suffering from a terminal illness.

It feels weird that I have to argue for safety and the scientific process in a forum for supposed intelligent people.

It's very anti-intellectual.

Intelligent people understand what a trade-off is. Testing experimental and potential risky treatments on humans does not make it less scientific.

These people will die anyway and most of them prefer to die fighting or at least knowing that someone might benefit(i.e their children) if a treatment is found.

It is both the human and scientific thing to do for them.

Imagine that you have a 99.99 chance of death. There is treatment that appears to work in 50% of people, but it's early days, it's only been tried on 10 people. What do you do? Do you want a bear certain probability of death or a 50% chance of a cure? I think it is entirely proper to allow people with the money to pay for it, to take that gamble. It's their life, not ours. It's their money, not ours. Sure, we need to be sure that the correct data is presented to the client, they mustn't be mis-sold. But otherwise I have no issue with people being free to take a gamble. I would absolutely furious if this chance for life was withheld from me. And so would you be.

When you have a terminal illness such as cancer, you're willing to try anything.

I feel like you need to allow for self euthanasia / deliberate opiate overdose if you allow people to become miserable mutants in medical experiments.

I feel like you should ask the people themselves what they want. These experimental drugs may save their lives and will help with future medicinal breakthroughs. Assisted suicide is another topic and imo should be allowed, but the two aren't mutually exclusive when it comes to legality.

Well what I mean is that if things go horribly wrong, the experimental patient should have the right to pull their own plug. It should be in place ahead of time considering the unknowns. Would you really want to do a treatment if it could leave you in a forced miserable existence for the next 40 years without any escape?

That situation is an extreme hypothetical and I'd probably take the experimental treatment along with painkillers/cannabis if there's any miserable side-effects. It depends on the person and their tolerance, I'd assume most people would prefer to live and be with their loved-ones. Humans are pretty resilient and they adapt. Nothing is stopping a person from committing suicide on their own if they aren't able to cope in the future.

Let’s say you have a life-threatening illness. all legal treatments have failed. there is a potentially life-saving treatment that has passed FDA safety trials but is still in efficacy trials and has not been approved for any legal use. You’re fine with just throwing up your hands and dying, because you’re not allowed to make that decision?

Let's say I'm a startup with a new idea for a treatment. I don't really have the funding to actually go through the proper testing and I decide to use humans to test my new ideas. All of the patients in my trial die a horrible death (much worse than going through cancer) in the process. In fact, there was no chance it would have ever worked.

Are you okay with these consequences? Regulations are in place for a reason. While I do think we need to loosen some of the regulations in the US, having no regulations, like what is describe in this article, will bring forth companies that have no business selling drug treatments and literally getting away with murder.

You set up a strawman and destroy it without answering any of my questions; this seems like arguing in bad faith.

Endeavoring to be more constructive and respond in good faith: No, I am not OK with those consequences, and the ludicrous strawman argument you raise bears zero relation to the entirely realistic hypothetical that I described.

I hope you are never stricken with a life-threatening illness that cannot be treated with our artificially limited set of legally available interventions.

"You set up a strawman and destroy it without answering any of my questions; this seems like arguing in bad faith."

I gave you a scenario that is very possible without some sort of regulations. We have regulations in place because experimental drugs can kill people without proper oversight.

China is not known for having a good track record in terms of regulations or caring about the life of a human being. Many people still won't buy baby formula to this day because of the lead scare a few years back.

"I hope you are never stricken with a life-threatening illness that cannot be treated with our artificially limited set of legally available interventions."

You are too emotional to have an actual discussion about this.

Yes. Your will be facing multiple lawsuit and go down if it found out that you knew that there was no chance it would have ever work. Maybe facing criminal charge too.

It might not work because it hasn't been completely tested. The human is the test and people may die during the testing process.

Why should anyone go to jail over this? The startup was just testing it out and the person was willing to take the risk. They might not have even known that it would kill the patient.

When a patient dies, the family will most likely try to sue the company that created the treatment. What company would ever take a risk like this?

The bright side is that the human testers in China will lead to better care in the rest of the world.

Why you're getting downvotes I have no idea.

What's to stop a hospital charging 1000s for a treatment they have no reason to think will work.

"Hey lets do a study to see if cheese prevents cancer. We'll do a thorough 20 year study involving 10,000 participants each paying $100,000pa. Obviously double blind to keep it fair." A Hospital administrator.

I assume you've never had to deal with a terminal condition, either as a friend or a relative?

Try googling Thalidomide.

These procedures are in place for a reason.

You're offering an emotional argument, that to me is even more reason not to have a profit motive like this. People will pay any price, for any thin sliver of hope. We should be making sure that isn't taken advantage of.

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