Nicole Wetsman, writing for The Verge:
Leaving your corpse to researchers after you die is a relatively easy process, but donating your medical records to science is still nearly impossible. There are body donation programs scattered across the United States, including at major medical schools, and every year, thousands of people participate. It would be incredibly difficult, though, for those same people to donate the reams of medical data that was collected throughout their life to a research team — even though some say they’d be interested in doing so. So when a group of ethicists and lawyers met at the Oxford Internet Institute last year to create an ethical code for the donation of medical records after death, they were building a framework for a process that, at this point, doesn’t exist.
[…..]
“We didn’t find any systems where you could actively give your data,” says Jen Krutzinna, a bioethicist, one of the code’s authors, and a member of the Digital Ethics Lab at the Oxford Internet Institute. “There’s no way to pass it on in a proper way.”
It’s easier to donate your body to science than your medical records
Of course data is really only valuable in the aggregate. Your body can be valuable as an individual specimen.
Many future advances in medicine will come from pouring over large volumes of data. We need a mechanism to make this possible.