• FilterItOut@thelemmy.club
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    2 days ago

    thanks to some combination of HIPAA and medical liability laws, I wasn’t allowed to say anything about it, even if asked point blank

    Are you sure that you understood that right? In every study I’ve helped out with, and when I’m dealing with patients, rule #1 is that the participant/patient has access to their information produced from the procedures and gets counseled by a doctor involved in the process if anything is found. There’s a neuroscience professor who famously recorded his own experience in the textbook he wrote, where he participated in an MRI study because his insurance wouldn’t approve an MRI. The tumor was found in the study, passed over to his healthcare team, and they were able to use it to get the surgery approved.

    • VeganCheesecake@lemmy.blahaj.zone
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      1 day ago

      I think the person might not have been qualified to make diagnoses at that point? With any MRT I’ve ever had taken, the people who actually took it told me they weren’t allowed to comment on it in any way, and I had to wait for the doctor to take a look.

    • Neuromancer49@midwest.social
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      2 days ago

      That’s the short of it - but we passed all brain data to a university affiliated neurologist for review. We also allowed participants to take a copy of their brain data if they wanted. I’ve got a CD of my own brain kicking around somewhere, and I even helped a few people 3D print their brains.

      But, anything that I said about the participants brain opened me up to liability. What if I said their brain looked OK and there was a tumor? Or vice versa? The University felt I could be sued, so we were trained to not speak about their brain.