this post was submitted on 07 Mar 2025
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I ran a lot of MRIs for my PhD. I saw somewhere around 100-200 different brains. About 10% of them had abnormalities. Of all the technicians, scientists, and (non-clinical) doctors I spoke with, we all agreed this was a very high rate of discovery. All my friends graduated without seeing anything weird. My advisor liked to joke that I was cursed. Eventually I stopped inviting my friends to do my experiments because I didn't want to deal with the risk of them having an abnormality - thanks to some combination of HIPAA and medical liability laws, I wasn't allowed to say anything about it, even if asked point blank. I didn't like that very much.
I made one exception, as a friend of mine came in for a study and I saw a golf ball sized cyst in his sinus. He had it surgically removed and he told me he stopped snoring the next day. It felt good to make a difference for him.
But, I saw one brain similar to the one documented here. It belongs to one of my close friends. It was harrowing. Entire left hemisphere was malformed, the ventricles were way too big and the cortex was way too thin. But the right side of his brain was underdeveloped, maybe the size of a tennis ball.
The weirdest part, he is 100% normal. In fact, he competed at a high level of college athletics. Normal Cognition, normal motor function, great sense of humor, and a very caring person. Now he has a great job, wife and kid, and we hang out often. But I can't bring myself to say anything, and every time I see his son I wonder about his brain.
I'm curious, what exactly are you worried about with your friend? Are the abnormalities you saw linked to a treatable disease?
Nope, not related to any disease I've ever seen. The best guess i have is fetal alcohol syndrome but it isn't a perfect match. It's just weird knowing he has a very odd shaped brain. And there's a lot of unknowns surrounding it.
What if he sees another doctor and they mention it to him? Would he be upset I didn't say anything? What if it is linked to some disease and I didn't tell him, and he gets sick?
What if it's hereditary and his kid has it, does it explain the motor delays? The premature birth? The problems they have with him sleeping?
Just a lot of unknowns.
Personally, if I had something like that, that wasn't causing me problems and wasn't linked to future problems, I wouldn't want to know. Especially because of how unknown it is. It sounds like there's no way that information could be of use to anyone other than a researcher, so it actually seems right that you can't share it.
On the other hand, I'm glad your other friend got their sinus checked out.
Could you tell him just "you should have another MRI at a clinic"?
That rule does not seem very ethical to me, in any case.
In the US getting an MRI for "no reason" can be very expensive. Probably wouldn't have been covered by insurance.
Could you release the already captured images for him to take to a doctor for medical advice?
You can tell him he should get a second mri that isn't bound by your rules.
$$$
Sure but then it's their call and resolves the if they find out issue.
It's not like you can just show up to the hospital and demand an MRI