‘I gave my DNA to a testing corporation – then it vanished’
‘I gave my DNA to a testing corporation – then it vanished’
A DNA-testing firm appears to have ceased buying and selling – without telling its customers what has happened to the highly sensitive data they shared with it.
Atlas Biomed, which has offices in London, offered to provide insights into people’s genetic make up as well as their predisposition to sure illnesses.
However, users are no longer able to access their personalised reports online and the corporation has not responded to the BBC’s requests for comment.
Customers of the firm describe the circumstance as “very alarming” and declare they desire answers about what has happened to their “most personal information”.
The regulator, the Information Commissioner’s Office (ICO), has confirmed it has received a complaint about Atlas Biomed.
“People have the correct to expect that organisations will handle their personal information securely and responsibly,” it said in a statement.
Experts declare it shows how users of DNA-testing services can discover themselves “completely at the mercy” of such companies when it comes to protecting very sensitive data.
Disappearing DNA reports
Lisa Topping, from Saffron Walden, Essex, sent a saliva sample to Atlas Biomed several years ago, paying around £100 for a personalised genetic update.
As well as telling her about her DNA profile, it claimed to also inform her about her predisposition to diseases and even injuries, taking into account information she had provided in an accompanying questionnaire.
She could access her update online – which she checked from period to period – until one day the website disappeared. She got no reply when she contacted them to inquire what had happened.
“I don’t recognize what someone else could do with [the data] but it’s the most personal information… I don’t recognize how comfortable I feel that they have just disappeared,” Lisa told me.
In 2023, Kate Lake from Tonbridge, Kent, paid Atlas Biomed £139 for a update it never delivered.
It promised her a refund – then went silent, despite her trying every means of contact she could discover.
“I just never heard back from anyone, it’s like no-one was at home,” she said.
She describes the circumstance as “very alarming.”
“What happens now to that information they have got? I would like to listen some answers,” she said.
The BBC was also unable to contact Atlas Biomed.
A phone number listed for the corporation is dead. The BBC visited its offices in London, but there was no sign of Atlas Biomed there.
The firm’s Instagram account, with over 11,000 followers, was last updated in March 2022. Its final post on X was in August the same year.
It shared a post on Facebook in June 2023, but did not respond to any of the comments – which were packed of people complaining about being unable to contact it or access their profiles.
Russia links
The apparent disappearance of Atlas Biomed is a mystery – but it appears to have links with Russia.
It is still listed as an energetic corporation with Companies House, where all UK-based businesses must register. However, it has not filed any accounts since December 2022.
It lists eight official positions – though four of its officers have resigned.
Two of the apparently remaining officers are listed at the same address in Moscow – as is a Russian billionaire, who is described as a now resigned director.
Atlas Biomed’s registered office is near London’s so-called Silicon Roundabout, one of the prime locations in the UK for tech firms.
When the BBC visited, there was no sign of Atlas Biomed itself, but a corporation registration firm based in the building confirmed that it was a client of theirs, and legitimately used the address as its own.
This firm, in an email, claimed that it could not put the BBC in touch with Atlas Biomed “for safety purposes”.
“We highly recommend that you contact them directly,” it said.
No-one from Atlas Biomed has responded to the BBC’s attempts to contact it.
Cybersecurity specialist Prof Alan Woodward said the apparent links to Russia were “odd.”
“If people knew the provenance of this corporation and how it operates they might not be quite so ready to depend them with their DNA,” he told the BBC.
‘At their mercy’
None of this explains where Atlas Biomed’s database of customer DNA has ended up – and the BBC has seen no evidence it is being misused.
But Prof Carissa Veliz – author of Privacy is Power – points out that DNA is arguably the most valuable personal data you have. It is uniquely yours, you can’t transformation it, and it reveals your – and by extension, your household’s – biological strengths and weaknesses.
Biometric data is given special protection under the UK’s version of GDPR, the data protection law.
“When you provide your data to a corporation you are completely at their mercy and you have to be able to depend them,” Prof Veliz said.
“We shouldn’t have to wait until something happens.”
Additional reporting by Graham Fraser
Post Comment