Kate LakeA DNA testing company appears to have stopped trading – without telling customers what happened to the highly sensitive data they shared with it.
Atlas Biomed, which has offices in London, is dedicated to providing insights into people’s genetic makeup and their susceptibility to certain diseases.
However, users can no longer access their personalized reports online and the company did not respond to the BBC’s request for comment.
The company’s customers described the situation as “very shocking” and said they wanted answers about what happened to their “most personal information.”
Regulatory agency the Information Commissioner’s Office (ICO) has confirmed it has received a complaint about Atlas Biomed.
“People have the right to expect that organizations handle their personal information securely and responsibly,” it said in a statement.
Experts say this shows that users of DNA testing services could find themselves “completely at the mercy of these companies” when it comes to protecting very sensitive data.
missing DNA report
Lisa Topping, from Saffron Walden, Essex, sent a saliva sample to Atlas Biomed a few years ago and paid around £100 for a personalized genetic report.
As well as telling her about her DNA profile, it claims to also take into account the information she provided in an accompanying questionnaire, telling her about her predisposition to disease and even injury.
She had access to her reports online – which she checked from time to time – until one day the site disappeared. When she contacted them to ask what happened, she got no reply.
“I don’t know what other people can do with (the data), but it’s the most personal information… I don’t know how comfortable I feel that they just disappeared,” Lisa told me.
In 2023, Kate Lake, from Tonbridge, Kent, paid Atlas Biomed £139 for a report that was never delivered.
Although she tried every contact method she could find, it promised her a refund but then fell silent.
“I never heard back from anyone, it was like no one was home,” she said.
She described the situation as “very shocking”.
“What happens with the information they get now? I want to hear some answers,” she said.
The BBC was also unable to contact Atlas Biomed.
The phone number listed for the company is no longer active. The BBC visited its offices in London, but there was no sign of Atlas Biomed there.
The company’s Instagram account has more than 11,000 followers and was last updated in March 2022. Its last post on X was in August of the same year.
It shared a post on Facebook in June 2023 but did not respond to any comments – which were filled with people complaining about being unable to contact it or access their profiles.
FacebookRussian link
The apparent disappearance of Atlas Biomed is a mystery, but it appears to have links to Russia.
It is still listed as an active company on the Registrar of Companies, where all UK businesses must register. However, the company has not submitted any accounts since December 2022.
It lists eight official positions – although four of those officials have resigned.
Two apparently remaining officials are listed at the same address in Moscow, as is a Russian billionaire who is said to be a now-resigned director.
Atlas Biomed’s registered office is located near London’s so-called Silicon Roundabout, one of the prime locations for UK technology companies.
When the BBC visited, there was no sign of Atlas Biomed itself, but a company registered in the building confirmed it was their client and was legally using the address as its own.
The company claimed in an email that it could not let the BBC contact Atlas Biomed “for security purposes”.
“We strongly recommend that you contact them directly,” it said.
Atlas Biomed has not yet responded to attempts to contact the BBC.
Cybersecurity expert Professor Alan Woodward said the apparent links to Russia were “bizarre”.
“If people knew the origins of the company and how it operates, they might be less willing to trust their DNA,” he told the BBC.
“Leave them at their mercy”
None of this explains where Atlas Biomed’s customer DNA database ended up, and the BBC found no evidence that the database had been misused.
But Professor Carissa Veliz, author of “Privacy is Power,” points out that DNA is arguably the most valuable personal data you own. It’s unique to you, you can’t change it, and it reveals your — and your family’s — biological strengths and weaknesses.
Biometric data enjoys special protection under the UK version of the GDPR (Data Protection Act).
Professor Veliz said: “When you give data to a company, you are completely at their mercy and you have to be able to trust them.”
“We shouldn’t wait until something happens.”
Additional reporting by Graham Fraser
