Data Privacy and Security

Should we donate our health data the same way we donate organs?

Donating organs after death is something an increasing number of people are signing up to do, but should we donate our digital selves as well?

A group of researchers are calling for a new system that enables people to donate their data after they die - much in the same way that people register to become organ donors – in order to further medical research at a much greater scale and speed than currently possible.

The paper – Data donation after death – is listed as ‘a proposal to prevent the waste of medical research data.’ The concept calls for governments to create a ‘Data Donor Card’ scheme which people would sign up for, and then upon death, would see their anonymised medical data made available for medical research.

“Organ donation is not a taboo anymore in most countries, as most people rightly recognise that it’s really important to save lives when you die by donating your organs,” says Dr. David Martin Shaw, a bioethicist at the University of Basel in Switzerland and one of the paper’s authors. “Donating your medical records and any pre-existing research data when you die could really help researchers and medical science, and thus save lives.”

The idea, claim the authors, could have a ‘substantial cumulative impact on society’. For example, large data sets on disease processes and the effect of different treatments could lead to the development of new lifesaving medicines and therapies.

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Dan Swinhoe

Dan is a journalist at CSO Online. Previously he was Senior Staff Writer at IDG Connect.

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