Plenty of Americans make the decision to donate their organs when they die, so why not do the same with a lifetime of medical data?
That’s the question that three researchers have urged patients and policy makers to consider, in a post published on The Conversation.
Two researchers with the University of Cologne and a bioethicist at the University of Basel write that medical data can be just as important to the medical community as a healthy organ. While alive, patients have certain rights regarding their medical data. With their consent, they can participate clinical trial or medical research.
But access to that same medical data gets much more difficult after death, even though it can be incredibly valuable for researchers. The authors propose a new system in which individual countries would create a “national database of data donors,” similar to the existing systems for organ donors.
“People should be able to indicate which type of projects they wish to share data with, which parts of their medical records they are happy to share and whether they are willing to share data in a non-anonymized manner,” they write. “They should also be able to give ‘broad consent’ to future use of data if they wish.”
Although the proposal is the first to address the issue of medical data donation after death, researchers have previously called for better data sharing in order to fuel clinical research, noting the limited use of data-sharing platforms for clinical trials.
In some cases, insurers like the Blue Cross Blue Shield Association have stepped in, providing access to de-identified claims to researchers at some of the country’s foremost medical schools.