DNA firm holding highly sensitive data ‘vanishes’ without warning

A DNA-testing firm, Atlas Biomed, has seemingly ceased operations without notifying its customers about the fate of their sensitive genetic data. The company, which had offices in London, offered genetic testing services that provided individuals with insights into their DNA, including information about potential health risks and predispositions to certain diseases.

However, customers are now unable to access their personal reports online, and the company has failed to respond to multiple inquiries from the BBC. This situation has left many customers feeling alarmed and concerned about the security of their highly personal information.

The UK’s Information Commissioner’s Office (ICO) has confirmed that it has received a formal complaint regarding Atlas Biomed. The ICO stressed that individuals have a right to expect organizations to handle their personal data responsibly and securely.

Experts are warning that this situation highlights the vulnerability of users who rely on DNA-testing services. With the increasing popularity of genetic testing, many consumers are left “completely at the mercy” of these companies when it comes to protecting their personal data, which is among the most sensitive information individuals can share.

Disappearing DNA Reports

Lisa Topping, from Saffron Walden in Essex, shared a saliva sample with Atlas Biomed several years ago, paying around £100 for a personalized genetic report. The report offered insights into her DNA, including information about her predisposition to certain illnesses and potential genetic risks. Lisa could access her report online and regularly checked her results until one day, the company’s website vanished without explanation.

When Lisa tried to contact Atlas Biomed to find out what had happened, she received no response. “I don’t know what someone else could do with [the data], but it’s the most personal information… I don’t know how comfortable I feel that they have just disappeared,” she said.

Another customer, Kate Lake from Tonbridge, Kent, had a similar experience. In 2023, she paid £139 for a genetic report that was never delivered. After the company promised a refund, Kate received no further communication, despite her efforts to contact Atlas Biomed. “It’s like no one was at home,” she said, adding that the situation was “very alarming” and that she wanted answers about the fate of her data.

Despite numerous attempts, the BBC has been unable to contact Atlas Biomed. A phone number listed for the company is no longer in service, and when the BBC visited its London offices, there was no sign of the company. The firm’s social media accounts have also been largely inactive since 2022. A recent post on Facebook in June 2023 received no responses, even as customers expressed frustration over the lack of communication.

Potential Links to Russia

The mystery surrounding Atlas Biomed’s sudden disappearance is compounded by the company’s apparent links to Russia. Although it is still officially listed as an active business with Companies House, Atlas Biomed has not filed any financial statements since December 2022. The company lists several officers, but four have resigned, and two remaining officers are based in Moscow. One of these officers is linked to a Russian billionaire, who is also listed as a former director.

When the BBC visited the firm’s registered office near London’s Silicon Roundabout, they found that the company had no visible presence there. A company registration firm located in the same building confirmed that Atlas Biomed had used their address but refused to facilitate any direct contact with the DNA-testing firm. The registration firm’s email response claimed that the BBC should reach out to Atlas Biomed “for security purposes.”

Security Concerns

The apparent disappearance of Atlas Biomed has raised concerns about the security and possible misuse of customer data. Although there is no evidence that the company’s database has been compromised or misused, cybersecurity experts are worried. Professor Alan Woodward, a cybersecurity expert, called the company’s ties to Russia “odd” and suggested that if customers knew more about the company’s operations, they might think twice about trusting them with their DNA data.

DNA, as Professor Carissa Veliz, author of Privacy is Power, explains, is one of the most valuable and personal types of data an individual possesses. It is immutable and reveals both personal and family health risks. Biometric data is afforded special protection under data protection laws like the UK’s GDPR, which ensures that companies must handle such data with the utmost care.

“When you give your data to a company, you are completely at their mercy,” said Professor Veliz. “You have to trust them, and we shouldn’t have to wait until something happens to realize how vulnerable our personal data can be.”

The disappearance of Atlas Biomed serves as a stark reminder of the potential risks involved in sharing highly sensitive personal data with private companies. Customers are left with unanswered questions about the safety of their genetic information, and the industry may face increased scrutiny as a result.