[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.