One of the papers discussed in the article was retracted because the subject didn't like the published paper,
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?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 Later she wrote expressing her wish for the publication to be withdrawn based on that she did not consent for this particular paper.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.
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).