[tolien]

Does it really matter? The cost of throwing out the privacy baby along with the bad actor bathwater is much higher than that of this one bad study, even if it was mitigated slightly by the good intent of the follow-up.

It would have been better to run a new study and try to reproduce the results but as we’ve seen with the crisis in reproducibility throughout the sciences, that’s problematic in itself.

[placer]

That’s not what the judge looking at this very issue felt:

“Judge Hauk concluded that on balance it was more important to determine how the patients were faring following treatment than any possible breach of confidentiality and invasion of privacy which were protected by their right to refuse to participate in the study”

Source: Alcoholism: A Review of its Characteristics, Etiology, Treatments, and Controversies by Irvine Maltzman

(Keep in mind this was the mid-to-late 1970s in California)

[tolien]

So in the same era as the Tuskegee Syphilis Study? I couldn't really care less what the judge concluded, I hope we've since established that medical ethics weren't what they should be.

The better of the quotes you've dropped in this discussion is

> the patients contacted prior to the court injunction all expressed a willingness to cooperate and to be interviewed

That is to say, the participants' expressed their consent to follow-up action. I'd still prefer not transferring personal information to another group of researchers, though - the same thing could have been achieved with some kind of advertisement in the media ("participated in a Sobell study? Call this number").

[graeme]

Tuskagee is about the worst example you could pick. The subjects in the trial would have benefitted substantially from having other researchers contact them.

[tolien]

Not really; by that point the damage was done.

The subjects would’ve benefitted equally by the doctors being put in prison for the rest of their lives (or given the death penalty, per Nuremberg) if only to set an example to the rest of the field.

[graeme]

What? No. Punishing the researchers benefits society through deterrence. What the patients needed was treatment. The earlier the better.

Massive damage was already done to their bodies, but you can still get rid of late stage syphillis with penicillin and prevent further damage.

[tolien]

Treatment's a matter for a public health service rather than other researchers though, right? There's not much science in another group of researchers taking over to test how penicillin treats syphilis; that's already settled. Access to the affected patients would then be a legal matter - the records would be seized by the police and/or prosecutors and that's a very different kettle of fish to the original example.

For what it’s worth, Tuskegee just happened to be the ethical failure that came to mind because it's been in the media recently (in the context of "why do PoC have reticence to take vaccination", i.e. for COVID-19). There's plenty of other examples where the damage was irreparably done [1, 2] where it would be questionable to hand the participants' personal information over to another group of researchers for further study.

1: https://en.wikipedia.org/wiki/Unethical_human_experimentatio...

2: https://en.wikipedia.org/wiki/Study_329

[placer]

Comparing Pendery 1982 to the Tuskegee Syphilis Study?? That’s a really emotionally charged and completely invalid reach.

I’m not sure how a reasonable conversation can continue. We’ve moved to a Twilight Zone alternate reality at this point. The only way we can go further in to la la land is to make a completely invalid comparison to Nazism so that Godwin’s Law can be invoked.

Another thing: Discarding what a judge says about a what is legal matter is not a particularly compelling argument. It’s the kind of thinking done by people who believe in conspiracy theories. As a contemporary example, people who are convinced that the 2020 United States presidential election was rigged, when pointed out that judges have concluded there is no reasonable evidence supporting that assertion, will say something like “I couldn't really care less what the judge concluded”.

[tolien]

I mean, when your entire post is a rant it's hard to converse reasonably ¯\_(ツ)_/¯

If your problem's with Tuskegee specifically (and at no point did I compare your alcoholism study with Tuskegee, that’s a straw man), there's plenty of other ethical failures I've referenced in sibling replies where it would also be problematic to hand patient data to a separate group of researchers, no matter the good intentions.

My original point, since it seems to have been missed, was that no matter the failings of the original study it would be problematic to pass patient data to a third party without a legal requirement to do so.

With respect to my disregard for what a judge says, if your basis for ethics is "if it's legal then it's fine" then you're definitely in cloud cuckoo land.