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Comment by theptip | Hacker News Reader

> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case”

I concede that I haven’t thought as deeply about this as ethicists, but I strongly suspect that the cost/benefit calculation here is way over-cautious if you think the theoretical induced harm is remotely close to the benefits of publishing.

The history of science is already full of self-experimenters, so at the margin publishing is unlikely to move the needle.

Furthermore, patients with cancer diagnoses are already extremely motivated to try whatever experimental treatments the FDA will permit; self-experimentation is already supply-constrained (of experiment opportunities) and there is excess demand. Again fuzzy concerns about population-level harms overrule individuals’ rights to seek treatments for their fatal diagnoses.

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I've been at least partly convinced that "medical ethics" very frequently looks nothing at all like what most people consider to be ethical. As far as I can tell, it exists mostly to prevent anyone from getting in trouble in the case that something goes wrong (which often means "do nothing"), rather than actually consider what is or is not ethical. It seems to be completely infected by the Copenhagen Interpretation of Ethics [0]

So, while they aren't always wrong, my default opinion is that, until given compelling evidence to the contrary, I shouldn't worry too much about what medical ethicists think on a particular topic. Even when they are right, they are usually right in a way that most normal people can easily see that it is correct.

[0] https://web.archive.org/web/20230302022931/https://blog.jaib...

It exists because, in the very recent past, a lot of shady stuff has happened just because people were curious. The “Tuskegee Study of Untreated Syphilis in the Negro Male”; Dr. Chester Southam injecting cancer cells into unconsenting patients; Josef Mengele's experiments in Nazi concentration camps… Maybe they overcorrected, but there's good reason!

Also the Japanese Unit 731

https://en.wikipedia.org/wiki/Unit_731

The US government granted many of the "scientists" immunity in exchange for giving over all the data they had learned and helped even cover it up lol

The Japanese did some real fucked up shit in these experiments like chopping off limbs and reattaching them to the opposite side and slicing open pregnant women.

They also flew low flying planes over Chinese cities and dropped Plague-infected fleas which killed tens of thousands of people.

In total, they killed hundreds of thousands of people.

IIRC even Germany thought unit 731 was bonkers

TIL the USA not only let the people they captured go free in exchange for the information they had on Unit 731, they continued experiments until 1956, well after the war, though this time with Japanese victims.

better to let them die in vain and lose irreplicable, un-re-execable data?

And Didier Raoulot https://www.lepoint.fr/sante/didier-raoult-30-years-of-unreg...

A hospital I worked at would only provide dialysis to immigrants if they were in florid kidney failure. So they’d come to the ER dying, get dialysis once, then get released with no follow-up. They’d have to wait til they were back in kidney failure to come back, no preventative care was funded by the fed so they just stuck to that. There is no ethics in the American medical system. Anything claiming to represent it is a scam.

Well, given recent events... maybe some people vote for "no free lunch out of my tax money", even though they themselves may end up needing the "free lunch" (the federal funded dialisys). Are you sure it's not ethical to deny it to them in this situation?

On a large enough scale, we decide the rules that apply amongst us. How could it be unethical? Who's being unfair to us, martians? God?

We're being unfair to each other... seems fair that we get unfair treatment.

They should see the Dialysis King!

https://www.youtube.com/watch?v=Ep-f7uBd8Gc

Emergent care instead of regular dialysis is vastly more expensive. All of this outrage over no free lunch is more expensive. Idiots.

That is the standard for American emergency departments, and they do that because EMTALA requires them to treat anyone enough to keep them from dying, if possible - but that's all.

I know, but it is not at all ethical, practical, prudent, or fiscally responsible.

It's the law that US hospitals have to provide care regardless of ability to pay in an emergency but not preventative care. Medicaid, which would cover dialysis for most poor people doesn't cover unauthorized immigrants. Your hospital is functioning as the law directs it to. I was going to put "as the law intends" but our system is very much a Frankenstein quilt with many effects that nobody really intends. But politicians know that people would be angry if they heard an immigrant was left outside a hospital to die of kidney failure and they know people would be angry about providing non-emergency medicine for free and they know that not many people will notice we collectively spend more money this way and most of the people who do notice won't see how it makes everybody's medical care more expensive rather than just hurting hopsitcal owners and unauthorized immigrants.

None of it is ethical, law or not.

Plus it is massively more expensive to let people continuously loop back into kidney failure.

More expensive and unethical.

I'm not confused about why the field exists. And I agree that something needed to be done to prevent repeats of those horrors. But the current state of the field is (in my opinion) unacceptable.

When something bad happens, the person it happened to or their family will often be (understandably) irrational, and make the maximum amount of fuss and ask for the maximum damages and penalties. Even if the risk was reasonable and ethical. So naturally researchers, medics, take extra precautions. Being reasonably ethical might not be enough protection.

One thing that might be done (in my clueless opinion) is accept that sometimes shit happens and preventing the victim from getting exaggerated revenge or damages or whatever.

I'm sure at least once it happened that people who actively requested experimental treatments turned around and sued or called for prosecution after their experimental treatment took a bad turn. Of course researchers will be reluctant to provide experimental treatments.

Do compassionate people really need a study to know those things are abhorrent?

If it’s not in a peer-reviewed study, how do you know it’s true?

> cost/benefit calculation here is way over-cautious ... theoretically induced harm... fuzzy concerns about population-level harms

It would be nice to at least have proper investigation of last alleged lab leak. When you talk about "fuzzy concerns" in light of last 4 years, I think you can not be serious.

There are cases where ultra high security virus lab sold disposed corpses on food market!!!

The only people who could do that investigation would be China, and they seem disinclined. Or possibly they already have done the investigation and aren't telling the rest of the world their results.

> overrule individuals’ rights to seek treatments for their fatal diagnoses.

That was an objectively good things about Trump’s first term, pushing for and signing Right To Try.

Medical ethics is a bit tricky. It's like the trolley problem on steroids.

I mean pulling the lever so only 1 person has to die instead of 5 seems simple until suddenly you're harvesting a healthy person's organs to save 5 others.

Heck we've seen it in action in covid-19 research. How much more useful data could we have had if we infected people deliberately? (or at least didn't just wait for them to get infected by chance) Sure some tens of people, maybe hundreds could have died as a result, but what is hundreds for a disease that kills millions? Besides, getting infected isn't even a death sentence, we've sent plenty of soldiers towards way worse odds.

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