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.
“The more data the better!” is Dr. Shaw’s response to being asked what data he would like to see being donated. “By combining the medical data of millions of different people, big data researchers can detect patterns and correlations that simply couldn’t be detected with smaller datasets.”
We can set our social media pages to become online memorials after we pass away – some predict the likes of Facebook will soon be more of a digital graveyard than platform for the living – but what happens to our personal medical data isn’t so easy to organise. In many countries, according to Shaw, it is much more difficult to use “deceased data” than it is to use data from living individuals – often because consent after death cannot be assumed.
The proposal claims that overprotection of data is creating a difficult research climate and warns that ‘simply forbidding access to the data of deceased patients is unethical’ because it assumes that what patients would want to happen and effectively ‘places privacy above avoiding diseases and helping sick people now and in the future’.
“There has been lots of focus on the importance of sharing your data with researchers while you’re alive, but what happens to your data once you’re dead has been a neglected topic,” says Dr. Shaw. “Obviously sharing data when you’re alive is very important, but we actually believe that discussing the topic of data donation after death will also encourage people to share now.”
While some countries – such as Wales – have an opt-out donation system, Dr. Shaw feels adopting such a system for ‘data donors’ would be counter-productive.
“I can see the arguments in favour of mandatory donation both for data and organ donation, but ultimately most people are happy to share data and we should respect the wishes of those who don’t want to do so.”
The proposal emphasises that it does not propose weakening current privacy rules, but simply giving people the choice to make their data available if they so wish. The idea includes giving people the option about sharing certain aspects of their medical data in the same way they choose which parts of their body they would like to make available after they pass away.
Services such as Apple’s HealthKit hope to collect large amounts of health data – much of it through wearable fitness trackers – while the likes of IBM and Google are starting to apply machine learning into healthcare in order to better diagnose diseases. Even without the addition of donated data, Dr. Shaw says he is extremely excited about where medical research could go.
“I actually share some health data with Apple using my Apple Watch. Medical research has a great future, not only because of data research but also because of amazing advances in gene editing and stem cells.”
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