[s1artibartfast]

>No wonder the Sobells tried to block the follow up study with lawsuits

It seems like there would be a totally reasonable concern about privacy here as well. If I participated in a study with finite scope, I wouldn't want my identity and medical information transferred to another group of researchers.

[placer]

The subjects were delighted (Edit: See below for actual quote from one of the Pendery team researchers) to be contacted by another research group, and some of them felt the treatment they got in the Sobell group was so shoddy, they ended up trying to sue the Sobell researchers.

Reference: https://www.nytimes.com/1984/09/11/science/panel-finds-no-fr...

[s1artibartfast]

>The subjects were delighted to be contacted by another research group

Where did you get that they were delighted from the article you linked? Were they all uniformly delighted?

It seems that either way, the original agreement/contract/TOS should govern what can be done with personal medical information.

[placer]

The reference was for the fact some of the original patients tried to sue the Sobells.

The “delighted” bit comes from Alcoholism: A Review of its Characteristics, Etiology, Treatments, and Controversies by Irvine Maltzman, which goes in to the Sobell controversy in great detail.

Edit: Going back to the book, here’s the most relevant quote from the late Maltzman: “the patients contacted prior to the court injunction all expressed a willingness to cooperate and to be interviewed” Maybe “delighted” was too strong of a word.

[s1artibartfast]

Thanks for clarifying.

[londons_explore]

Yet in society as a whole, the desire to prevent more people going down this "moderate drinking" path and ruining their lives seems far more important than the need to prevent 20 people getting a phone call saying "Can I ask some followup questions?".

I feel like using someone's private data for the purpose of asking if they want to join a follow-up study should always be acceptable.

[frereubu]

There are a lot of people who "feel" that data should be able to be used in situations that are much more sketchy than you're suggesting. If you don't abide by the initial permissions that people give, how do you decide whose feelings win out? The best you can hope for is to ask people explicitly in the original study whether they're happy to be contacted for a follow-up - it's not clear to me whether that was the case here.

[foolmeonce]

This is all quite true, the loophole seems to be that you can take these rules seriously but have much less obligation to keep what you publish within the limits your choices within the rules create.

The original publisher could only claim to know it had an unconfirmable suppressive affect on drinking for the short period they were allowed to contact the subjects. The limits were clearly used to imply more and alternative researchers that responsibly asked for sufficient permissions at the start would have been at a double disadvantage. (Harder to recruit subjects and results that were less likely to be remarkable.)

[overscore]

I feel like using someone's personal data for any purpose other than the one for which it was collected should never be allowable. Luckily I live in the EU, where this would already be unlawful.

[bluecalm]

Imagine it was discovered 5 years after the initial study that the medicine given during it was harmful and there are long term health consequences. The discovery was made by another team. Wouldn't you like to know?

Another example: a study for rare condition was conducted. No effective treatment was found. A few years later very promising treatment was discovered. Wouldn't you like to know, even if the original form didn't ask your permission?

[frereubu]

The easy way to remedy this is that all forms should ask for that permission explicitly, and many do. When doing an MSc in neuroscience, even though our research was about the contribution of early visual areas to reading tasks, we always asked permission to get in contact if we found anything problematic on structural MRI scans. If someone explicitly says no to that (which I can't remember happening - as you suggest, the vast majority of people would like to know) that's their choice.

Edit: What no-one has said here is whether the initial study did say that, and the original researchers were going against the wishes of the participants. Given how the researchers behaved that doesn't seem entirely unlikely.

[placer]

Probably the most extensive critical account of that 1973 Sobell study, and how the Pendery 1982 follow-up came to be published, is the book Alcoholism: A Review of its Characteristics, Etiology, Treatments, and Controversies by Irvine Maltzman. All quotes in this post come from that book.

One patient’s “attorney had complained to the Hospital about the treatment that he had received.” As I describe elsewhere in this thread, some of the patients ended up trying to sue the Sobells. So, no, the patients were not happy with the treatment they received.

The subjects had no problem being contacted for follow-up: “the patients contacted prior to the court injunction all expressed a willingness to cooperate and to be interviewed”

Indeed, a judge familiar with the medical privacy laws of that era (we’re talking the mid-to-late 1970s here) made a court decision that contacting the patients for follow-up was perfectly OK: “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.”

[bluecalm]

The takeaway is that it's not always possible to think about all the cases it's worth it to contact the person. At the end of the day it's one phone call or email. Mild inconvenience for potentially life changing chance or information. As long as it's a persona in a position like a doctor o researcher making a call I am happy to waste a minute of my life trusting their judgement.

I don't really like where the EU privacy laws are going. I want "try to be reasonable" option. If they are not I can always tell them to delete my contacts later.

[overscore]

EU data protection laws are reasonable. They allow for public health authorities to take all the steps you're suggesting, and they require companies which hold such information to make them available to those authorities. They do not allow researchers to transfer data to a third party to perform further research. Simple, clear, reasonable, and protective of the basic human rights of the study participants.

[s1artibartfast]

There are clear processes to go through for these situations. Usually, individuals can specify in the original contract if they are open to follow up.

>Another example: a study for rare condition was conducted. No effective treatment was found. A few years later very promising treatment was discovered. Wouldn't you like to know, even if the original form didn't ask your permission?

You are literally describing healthcare providers giving confidential medical information to third parties without consent. In no way should anyone but the patient be able to void or reinterpret the contract, their presumption of the patients wishes should never override those stated by the patient.

[bluecalm]

It's interesting how you are so convinced of it even though it's easy to come up with scenarios assuming about any ethical system where privacy concerns are less important.

I gave them something dangerous during the trial and they didn't agree to a follow up. I discovered they need treatment now or they will die (may happen with a poisoning for example). I am still contacting them and I surely hope you would too.

[s1artibartfast]

I think we might be making different assumptions. There are 3 options as I see it

1) If the contract signed by the patient is silent on the topic, and you have their information, you are free to contact them.

2) If the contract signed by the patient explicitly says you can not contact them for this reason, then I think it clearly unethical to do so.

3) If the contract is ambiguous, or the intent is unclear, then it is a judgement call.

I am talking about #2 and I think you are talking about #1 & 3.

There are valid reasons why people would want to select #2, and if they do, their wishes should be respected.

[overscore]

In the EU, those cases would be covered by the lawful basis of being in the vital interest of data subject. However, that would only cover that particular reason for processing, and in the scenarios above would be handled by a public health authority. It would not allow personal data to transfer to a third party for the purpose of continued research.

[touisteur]

'always'... maybe ask first during the first study? Why do you get to decide inconditionnally that I'd ever want to hear about anything to do with this after the study? Did they agree for 50 years of phone calls about 'magic new treatment' for their disease?

Sorry, I don't see it. If you don't have the consent of the original subjects, do another study with 50 other people...

[jacquesm]

Do you think it was their 'reasonable concern about privacy' that drove their zeal to suppress the report or do you think it was because the was immediate proof that their study was nonsense?

[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.

[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.