Researchers pitch post-mortem data donation to promote research
Most people would like to protect their medical data while they’re alive, but how about when they die? While post-mortem donations usually involve still-healthy organs, three researchers, including a bioethicist at the University of Basel, recently suggested patients and policy makers should begin to consider the idea of data donations, too.
Writing at The Conversation, David Martin Shaw, J.Valérie Gross and Thomas C. Erren, of the Universities of Basel and Cologne, respectively, note that “Data might not seem important in the way that organs are. People need organs just to stay alive, or to avoid being on dialysis for several hours a day. But medical data are also very valuable – even if they are not going to save someone’s life immediately. Why? Because medical research cannot take place without medical data, and the sad fact is that most people’s medical data are inaccessible for research once they are dead.”
The problem, however, is that medical data gets much more difficult after death, despite its value for researchers. Consequently, they 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.”