[placer]

This happened back in the 1970s when some researchers tried to get follow-up information about whether alcoholics can moderately drink again.

Here’s what happened: The paper Sobell 1973 made the bold claim that alcoholics could moderately drink again if given the right kind of therapy. So, other researchers asked: What was the long-term outcome with those patients supposedly engaging on “controlled drinking”?

So this research team including one Pendery asked Sobell for the list of patients so they could perform a proper follow-up. The Sobell researchers refused to provide the list. The Pendery team managed to get the list anyway. The Sobells then sued Pendary and their team to stop them from using the list.

After some litigation, the Pendary team got the Sobell lawsuit dismissed and then followed up with those supposedly moderate drinking patients.

Out of the 20 patients the Sobell study claimed were moderately drinking, only one arguably was still moderately drinking a decade later. Four of those “moderate drinkers” died from drinking too much. Eight were engaging in out of control drinking. Six were completely abstinent from alcohol. And one could not be found, but appeared to be “gravely disabled”.

No wonder the Sobells tried to block the follow up study with lawsuits: Because it showed that those “moderate drinkers” were no longer moderately drinking.

After a lot of effort, the Sobell lawsuit(s) were dismissed and the truth won.

References: https://www.nytimes.com/1982/11/02/science/showdown-nears-in...

https://www.nytimes.com/1982/06/28/us/alcholism-study-under-...

[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.

[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.

[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.

[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”.

[mschuster91]

> After a lot of effort, the Sobell lawsuit(s) were dismissed and the truth won.

The truth? Especially in anything related to alcohol/substance abuse, there most often is no objective "truth", as there are a lot of religious / moralizing standpoints involved. Alcoholics Anonymous, for example, has been shown to be more morals than science: https://www.theatlantic.com/magazine/archive/2015/04/the-irr...

What does help however is "housing first": https://www.samhsa.gov/homelessness-programs-resources/hpr-r...

Kinda makes sense, given that many people on the streets basically self-medicate either existing untreated mental health problems or the (enormous) stress that comes with living on the streets.

[xg15]

> The truth? Especially in anything related to alcohol/substance abuse, there most often is no objective "truth"

I dunno, sounds pretty objective to me:

> Out of the 20 patients the Sobell study claimed were moderately drinking, only one arguably was still moderately drinking a decade later.

Of course, to conclude from a 20 person study that moderate drinking can never work is another thing. But simply ignoring the study can't be the solution either.

> What does help however is "housing first"

This is probably true, but you didn't give any empirical evidence for that either. Also, not all alcoholics are homeless.

[placer]

That article from The Atlantic uses outdated information. The figures Glaser used for AA efficacy do not come from peer reviewed science and are inaccurate. See https://www.thecut.com/2015/03/why-alcoholics-anonymous-work... for a direct rebuttal of that 2015 article.

The current science shows that Alcoholics Anonymous is an incredibly effective treatment for many alcoholics. Indeed, the 2020 Cochrane Review on AA shows that Alcoholics Anonymous is more effective then other treatments in getting alcoholics abstinent. See https://www.nytimes.com/2020/03/11/upshot/alcoholics-anonymo... or https://www.wbur.org/commonhealth/2020/03/11/medical-science...

Keep in mind that Cochrane reviews are the golden standard for high quality meta analysis of science, as pointed out at https://en.wikipedia.org/wiki/Wikipedia:MEDDATE

[api]

AA works, but it likely works more because of the community than anything else. Drug addiction is often a symptom of isolation. Drugs often mimic the brain chemicals we get through positive social interaction, serving as a placebo.

[ficklepickle]

You are kind of right. Being a part of a community all going through the same struggle definitely helps. Just not being around people getting wasted is a big help in itself. You can't just take a large chunk of your life away, it must be replaced with something.

The part about helping others is a big factor. It gives a reason other than self, which seems to be a big factor.

It's hard to say what makes it "work" for certain. The Oxford Group, the predecessor of AA, lacked the helping others aspect and did not see widespread success. This is what AA itself considers to be their unique magic.

Or maybe it's all the sayings! God, there are so many sayings.

Despite being very hostile initially, I got a lot of benefit from 12 step programs. It is not something I have stayed formally involved with, but I got a lot of helpful insight.

I don't think any one thing did it for me, it was a long and difficult process. The fact I'm alive and stable today is a small miracle. Most people in the state I was aren't so lucky.

I know what doesn't work though: Shame. I had to stop shaming myself before I could get well.

[DanBC]

It's nice that the WBUR link includes a link to the review. Here it is for people who want it directly:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD...

[placer]

The full 2020 Cochrane review on AA is paywalled until March, so I’m linking to media summaries of the review until it becomes open access.

[DanBC]

What am I missing please?

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD...

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD...

[placer]

When clicking on the link multiple times, Cochrane no longer gives access to the full report.

It will become non-paywalled (or should I say, non-semi-paywalled) come March over at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7065341/

[probably_wrong]

Maybe I'm misreading your comment, but I think you are mixing two different issues.

What about alcoholics who already have a home? "Housing first" won't help them, while AA arguably would.

[DanBC]

Here's the English NICE advice about alcohol use disorders.

https://www.nice.org.uk/guidance/cg115

The evidence tab is useful to see what information they used to make the decision: https://www.nice.org.uk/guidance/cg115/evidence

[placer]

Here’s the 2016 (i.e. done during the Obama administration) report from the US Surgeon General on some resources which help with recovery: https://www.ncbi.nlm.nih.gov/books/NBK424846/

Looking over at that Nice website, it looks like the Nice reports haven’t taken the information the 2020 Cochrane review on AA used in to account yet.