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Re:When Dying Patients Want Unproven Drugs by zo1 on Monday June 19, 2023 @02:54PM (#36395125)
I have no better words: that is evil.
Re:When Dying Patients Want Unproven Drugs by Wowfunhappy on Monday June 19, 2023 @03:29PM (#36395536)
This comes from an article on a different topic, but the specific anecdote felt relevant here:

https://astralcodexten.substack.com/p/book-review-from-overs...

> If your lungs can’t breathe well, doctors can put you on a ventilator, which forces air in and out. It’s hard to get ventilators working right. Sometimes they push in too much air and injure your lungs. Sometimes they push in too little air and you suffocate. There are big fights about what settings to run ventilators on for which patients. For a while, doctors fought over whether to set ventilators on high vs. low, with many experts in each camp. Researchers formed a consortium called PETAL to study this.

Then, an institutional review board blocked the study:

> Its director, ethicist Jerry Menikoff, had decided maybe it was unethical to do RCTs on ventilator settings at all. He asked whether they might be able to give every patient the right setting while still doing the study. The study team tried to explain to him that they didn’t know which was the right setting, that was why they had to do the study. He wouldn’t budge.

Yes, putting someone on the wrong ventilator setting could kill them! That's obviously evil! Unfortunately, nobody knew which setting was the wrong one! The only way to find out was to try both, in a systematic and scientifically-valid fashion.

Re:When Dying Patients Want Unproven Drugs by shadowgovt on Monday June 19, 2023 @04:21PM (#36396012)
Can you clarify why that is evil? Are you referring to the use of control groups or the division of the test group into several overlapping trial compounds?
Re:When Dying Patients Want Unproven Drugs by captaincrisp on Monday June 19, 2023 @06:25PM (#36397220)
I bet it's control groups.

The FDA thinks similarly. In late 2021, they canceled trials of Paxlovid because it was immoral to have a control group. They did not then _waive the trial requirement_, meaning Paxlovid was both too proven to deny but too unproven to be administered.

Re:When Dying Patients Want Unproven Drugs by zo1 on Tuesday June 20, 2023 @12:17AM (#36399645)
Having a control group, but specifically in a study only given to terminally ill patients. Leave the control group to a subsequent study after effectiveness has been established in terminally ill patients.

I understand control groups in general, those are fine. But this is specifically in trials where people are pinning their last hopes out of desperation on some medicine and some random drop of the dice seals their fate.

Re:When Dying Patients Want Unproven Drugs by davrosthedalek on Tuesday June 20, 2023 @02:39AM (#36400502)
I agree with you in principle, but where do you draw the line for terminally ill? 100% terminal? in what time frame? 99% terminal? 90%? 50%?

I'd imagine that somebody who has, say, a 10% chance to die in 3 month, is also quite desperate.

Re:When Dying Patients Want Unproven Drugs by shadowgovt on Tuesday June 20, 2023 @09:56AM (#36404023)
(a) some random drop of the dice already sealed their fate. If anything, being admitted to an experimental group and then clustered into control or not, is the DM giving a second roll of the dice.

(b) most therapies don't improve prognosis in terminal cases and some make it worse. We don't know which beforehand. In the cases where the therapy makes it worse, was it therefore immoral to not put more people in the control group?

I'd argue the lack of knowledge makes it a wash morally. If we knew beforehand whether the therapy would be effective, we wouldn't need the control group, but we also wouldn't need the study.