Unwanted life after death: Experts warn personal data from fashionable genetic testing kits and social media accounts may be hijacked after a customer dies

  • How genetic testing companies store DNA after death is ‘unclear’  experts warn 
  • Powerful companies hold ‘our digital data, our private data, after our lifetime’
  • DNA testing via saliva samples is now a multi-million-dollar business in the US 

Experts have warned people who submit saliva samples to trace their family tree or figure out their risk of health conditions lose control over what happens to their genetic information after they die. 

The use of DNA profiling information after customers die is ‘unclear’ and the private data could be made public or have other unknown uses. 

DNA kits provided like AncestryDNA, 23andMe and a host of other firms now offering to dissect people’s genetic code for a fee. 

Meanwhile social media profiles such as on Facebook can be hijacked as part of a wider effort to control people’s digital databases after they die, experts say. 

The issue of how websites use our data after we die was raised at the annual conference of the Association for the Advancement of Science in Seattle this week. 

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Close-up of collection kit for personal genomics technology company 23AndMe on a retail store shelf

Professor Stephanie Fullerton, professor of bioethics and humanities at the University of Washington School of Medicine, spoke of the growing number of people signing up for DNA tests.

She described DNA as this ‘amazing thing’, unique to each person and their family, but added: ‘It’s being held by for-profit companies, in the context of direct-to-consumer genetic testing practices.

‘It’s being developed and contained in hospital settings from the context of genetic testing and medical practices.

‘And in some cases, what happens with that information after we die is very unclear.’

A recent study found that Facebook could have nearly five billion dead users by 2100.

Experts say it is now relatively common for people’s social media pages to be used after their death by family or friends who know their password, or to be hacked by unscrupulous strangers.

MyHeritage offers it saliva-based DNA testing kits for £79, which it says reveals ‘the ethnic groups and geographic regions you originate from’

Dr Faheem Hussain, a clinical assistant professor in the School for the Future of Innovation in Society at Arizona State University, said: ‘It is a design flaw with global implications, when we talk about how we are dealing with this phenomenon of digital afterlife.’

He added that powerful companies hold ‘our digital data, our private data, during our lifetime and after our lifetime’.

Dr Hussain raised the situation of people being approached with job interview offers after their death from the employment site LinkedIn, and said friends and family members may find situations like this distressing.

He said: ‘Long story short, I can have a “fake me” living happily ever after.’

DNA is scrutinised at home, with kits like AncestryDNA, 23andMe and a host of other firms now offering to dissect your genetic code for a fee

Currently social media sites allow people’s pages to be turned into a memorial after they die, with an appointed loved one looking after the account.

But experts say it is down to people to set this function up before they die – which many often do not think about doing.

On DNA data, which is freely given to firms by people trying to find relatives or research their Viking heritage, Professor Fullerton said: ‘Almost all of us will be invited to participate in these kinds of tests and exchanges of information at some point in our lives.

‘And so we need to be thinking about this now – thinking about how we want to dispose of this information.’

Last year, a panel of experts at Harvard Law School warned of the dangers of genetic snooping becoming the new way to invade privacy and how a person’s identity can now be pieced together with relative ease.

DNA analysis also has the potential to pave the way for the extremely private genetic information of high profile people routinely making its way into the public domain. 

WHY DO PEOPLE SUBMIT SALIVA SAMPLES? 

Saliva samples are collected by genealogy companies to help provide a genetic breakdown for consumers.   

They are supposed to offer a quick, convenient and non-invasive method to sample people’s DNA, compared to blood samples. 

Ancestry.com, 23andMe, MyHeritage, Living DNA and FamilyTreeDNA all offer saliva-based DNA tests that range in price from £50 to £150.  

These online platforms charge subscribers to send out saliva testing kits in the post. 

Most of the DNA is saliva is from white blood cells, according to one study. 

Analysis of this DNA can reveal distant relations with people of similar traits.

This can help customers trace their family history and reconnect with possible relatives, although the accuracy of these services have been questioned. 

Saliva sampling is a particularly big business in the US where family heritage tends to be very mixed.  

 

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