Why you should donate your data (as well as your organs) when you die
By David Martin Shaw, J. Valérie Gross and Thomas C. Erren
Feb 13 2017
Most people are aware they can donate their organs when they die. Doing so is very important: Each deceased donor can save several lives if he donates his organs and tissue and they are used for transplantation. Support for organ donation among members of the public is very high – at over 80 percent in some countries, even if many people have not yet gotten around to registering as an organ donor.
But organs aren’t the only thing that you can donate once you’re dead. What about donating your medical data?
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.
For example, working in shifts can be disruptive to one’s circadian rhythms. This is now thought by some to probably cause cancer. A large cohort study involving tens or hundreds of thousands of individuals could help us to investigate different aspects of shift work, including chronobiology, sleep impairment, cancer biology and premature aging. The results of such research could be very important for cancer prevention. However, any such study could currently be hamstrung by the inability to access and analyze participants’ data after they die.
While alive, people have certain rights that allow them to control what happens to data concerning them. For example, you can control whether your phone number and address are publicly available, request copies of data held on you by any public bodies and control what Facebook displays about you. When you are dead you will no longer be able to do any of these things, and control of your digital identity after death is a controversial topic. For example, families often cannot access deceased relative’s iTunes purchases, or access the dead person’s Facebook page to indicate that he or she is now deceased.
When it comes to medical records, things become even more complicated. While alive, many people give their consent to participate in medical research, whether it’s a clinical trial of a new drug or a longitudinal study based on medical records. Without their informed consent, such research cannot normally take place. Medical confidentiality is rightly regarded as extremely important, and it can be suspended only with patient consent.
In most jurisdictions, the same applies once persons are dead – with the added problem that consent cannot be obtained from them at that point.
But it would be a serious mistake to assume that everyone wants such strict data confidentiality to persist after death. Just as in life, some people would provide their data for medical research in order to develop new treatments that could help save people’s lives.
Recognizing this fact, some countries do allow researchers to use deceased person’s data. In the United Kingdom, medical records remain confidential for a century after a patient’s death, but permission can be sought from the Public Records Office to use data from deceased persons in research.