The ethics of medical case reports in the age of the internet

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Fishnut
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The ethics of medical case reports in the age of the internet

Post by Fishnut » Fri Apr 23, 2021 7:21 pm

I saw this article in Retraction Watch and it got me wondering about how we balance reporting medical unusual and potentially distinctive cases and maintaining anonymity in an age where that's increasingly difficult. I think most patients would be happy for their misfortune to be reported on to assist other doctors should they face a patient in a similar predicament, but I'm pretty sure most of those patients wouldn't want to end up as story in the tabloids where family or friends might be able to put two and two together and realise who the story is about (especially when photos are involved).

One of the papers discussed in the article was retracted because the subject didn't like the published paper,
Our patient gave consent for her case report to be published while she was in the hospital after a successful surgery and excellent recovery. The initial consent form signed was the surgical consent for the procedure itself which allowed us to take photos for teaching and the second informed written consent form was a standard form for publication in a journal. At that time she was very happy for the case to be published. A year and a half later she wrote to me expressing that although she signed the consent form she did not read the article before publication and she requested a copy of the publication. Later she wrote expressing her wish for the publication to be withdrawn based on that she did not consent for this particular paper. Different reasons were given in subsequent conversations but she remained adamant that the paper be removed.
I wouldn't go so far as to say patients should have the right to co-authorship, but I do wonder if there needs to be more involvement of patients in the writing process so that they have more say in what information is shared and how it's framed (so long as it doesn't affect the accuracy). I recognise this would cause significantly more work but if it saves retractions might it be worth it?

When it comes to having images of your parasite-infected bum being shown in papers I don't know if there's any great solution. Authors have no idea what the press are going to pick up on, your parasite-infected bum paper might be completely ignored while your colleagues could be a sensation, and you have no idea how the press will report on it. I remember colleagues having a paper that got a lot of press attention for something the paper didn't really say, and I'm sure there's people on this forum who've had similar things happen with their papers. The only thing that comes to mind is to make the images available on request, either to the journal or the researchers. It adds one small barrier that could reduce the number of rubberneckers while still making the visual info available for those who need to see it. Though how you'd stop someone 'leaking' it I don't know. It's all so very complicated.

One thing I have found myself wondering is about the usefulness of these case studies. Do doctors even find them useful? I can't help but wonder if some of them are just about sharing the weird stuff they see, with little medical justification (especially those about foreign objects stuck in orifices for sexual gratification).
it's okay to say "I don't know"

Allo V Psycho
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Re: The ethics of medical case reports in the age of the internet

Post by Allo V Psycho » Sat Apr 24, 2021 8:51 am

Fishnut wrote:
Fri Apr 23, 2021 7:21 pm


One thing I have found myself wondering is about the usefulness of these case studies. Do doctors even find them useful? I can't help but wonder if some of them are just about sharing the weird stuff they see, with little medical justification (especially those about foreign objects stuck in orifices for sexual gratification).
Case reports relate to rare events. While, almost by definition, this means the condition is not of public health concern, there are cases which reveal something valuable about processes, even if they are extremely rare. Fetus-in-fetu might be one example, or extra-uterine pregnancies, or even human tails.
Identifiable images should never be published in my view, and I would have expected that to be the normal perspective.

monkey
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Re: The ethics of medical case reports in the age of the internet

Post by monkey » Sat Apr 24, 2021 4:09 pm

In my field (the clinical side is vision science and ophthalmology) it is extremely hard to publish a case study, the journals just don't accept them. Listening to what my clinical colleagues say, it doesn't seem that they find them that useful.

I found this out when I did some optical modeling based on a rare anomaly which provided a really nice natural experiment. The optics journals said "too clinical" and the clinical ones said "no case studies".

nezumi
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Re: The ethics of medical case reports in the age of the internet

Post by nezumi » Sat Apr 24, 2021 4:33 pm

Medical Case Studies are only there for people like me to gawk at. Keep em coming people!
Non fui. Fui. Non sum. Non curo.

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