Making plans for digital life after death
Growth of technology poses a question: Who gets all your data when you die?
Before you die, please think about your digital and genetic afterlife, researchers have urged. The expanding use of technology means that people now leave an extensive body of personal information behind them when they die — a digital and genetic legacy that requires careful handling, according to academics at the American Association for the Advancement of Science annual meeting in Seattle.
Social media and other apps and websites compile large quantities of personal data while people’s genetic records live on in biobanks. Yet there are no consistent rules about what happens to all this data after someone’s death or who should have access to it, several researchers said.
“There is a significant design fault about how we are dealing with the phenomenon of digital afterlife — with global implications,” said Faheem Hussain, a clinical assistant professor at Arizona State University who is researching the issue.
“We have normalised talking about safety and security of our data and privacy, but we should also start including the conversation of how to manage data afterwards,” he said. “It’s a bit tricky because it involves death and no one wants to talk about it.” Family and friends often struggle to gain access to the deceased’s social media account, according to Hussain.
Facebook will turn a user’s page into a memorial after death and users can appoint a legacy contact to look after their account, while Google allows users to set up a trusted contact who will get access to parts of their account. But these preparations only work if someone implements the required settings in advance — and the rules differ markedly between companies.
Hussain also found it was “quite common” for living people to take over social media accounts of the dead — often by deception and without the family’s consent — and then run them as if the owners were still alive. This was particularly frequent in Asia, he added.
“I can have a fake me living happily ever after,” he said. “My friends and family may have issues with that. If I see somebody else is using, say, my dead brother’s account, then there
It’s a bit tricky because it involves death and no one wants to talk about it
Researcher Faheem Hussain
may be a contest with us saying he is dead and he replies: ‘I’m pretty much alive’.”
Our genetic afterlife also poses a challenge, said Stephanie Malia Fullerton, bioethics professor at the University of Washington School of Medicine, because millions of people have donated DNA to research and medical biobanks and to consumeroriented testing companies such as 23andMe.
“We very rarely think about where that DNA goes after those tests are done,” she said. “We don’t currently have a societal or even global consensus about what we should be doing with that information after we die . . . What happens with it is legally very unclear but mostly we don’t have legal or regulatory protection.” Fullerton suggested, for example, that people should have the right to give family members access to their genetic records after death for specific purposes such as medical diagnosis. But they might not want them to have access to DNA data for the purposes of tracing family relationships.
“Many of our research processes are pushing us towards broader and broader forms of consent, so that we have less and less say about how our genetic information will be used,” she said. “But even the little bit of say that we do have effectively goes away after we are gone.”
Society as a whole needed to have a more open discussion about people’s postmortem digital and genetic rights, while individuals should also decide their own wishes, Fullerton and Hussain both argued.