@roboneko @/rra@post.lurk.org There are two issues. The first is that there is just no exception to informed consent in medicine so they are asking for something new, and there are historical reasons to not want aggregate access to this kind of data. The second is medical information is some of the most sensitive information about a person. This is a controversial statement, but I think 100% data anonymization is probably impossible. A lot of these researchers are working for or sponsored by corporations so it's not really just in the hands of doctors/scientists.

What I found was many medical researchers want access to all medical records and don't want you to even be able to decline consent.