In a recent opinion piece in The Conversation, three experts — David Martin Shaw, PhD, J. Valérie Gross, MD, and Thomas Erren — outlined why people should consider donating their data after their death.
Although it can’t immediately save a person’s life, medical data is still invaluable. “Why?” the authors ask. “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.”
Unfortunately, donating medical data after death isn’t as easy as donating organs after death. Data rights become more complicated after a person dies. Researchers can’t get consent from a deceased individual, and people’s medical information typically remains confidential once they die.
Through the America COMPETES Act, U.S. citizens are encouraged to share data that’s already in use by researchers. But currently, there’s no platform through which Americans can sign up to be medical data donors, according to the authors.
Dr. Shaw, Dr. Gross and Mr. Erren propose a solution. “We think countries should create national databases of data donors, which could be used both for living patients to control how their medical data are used and shared, and for them to indicate whether they wish to continue sharing data after death,” they wrote.
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