I gave my DNA to monitoring firm

A DNA-testing agency seems to have ceased buying and selling – with out telling its prospects what has occurred to the extremely delicate knowledge they shared with it.

Atlas Biomed, which has places of work in London, supplied to offer insights into individuals’s genetic make up in addition to their predisposition to sure sicknesses.

Nonetheless, customers are not capable of entry their personalised studies on-line and the corporate has not responded to the BBC’s requests for remark.

Prospects of the agency describe the state of affairs as “very alarming” and say they need solutions about what has occurred to their “most private data”.

The regulator, the Info Commissioner’s Workplace (ICO), has confirmed it has acquired a criticism about Atlas Biomed.

“Folks have the correct to anticipate that organisations will deal with their private data securely and responsibly,” it mentioned in an announcement.

Specialists say it reveals how customers of DNA-testing companies can discover themselves “utterly on the mercy” of such firms in the case of defending very delicate knowledge.

Lisa Topping, from Saffron Walden, Essex, despatched a saliva pattern to Atlas Biomed a number of years in the past, paying round £100 for a personalised genetic report.

In addition to telling her about her DNA profile, it claimed to additionally inform her about her predisposition to ailments and even accidents, taking into consideration data she had supplied in an accompanying questionnaire.

She may entry her report on-line – which she checked now and again – till sooner or later the web site disappeared. She received no reply when she contacted them to ask what had occurred.

“I don’t know what another person may do with [the data] however it’s essentially the most private data… I don’t understand how snug I really feel that they’ve simply disappeared,” Lisa informed me.

In 2023, Kate Lake from Tonbridge, Kent, paid Atlas Biomed £139 for a report it by no means delivered.

It promised her a refund – then went silent, regardless of her attempting each technique of contact she may discover.

“I simply by no means heard again from anybody, it’s like no-one was at dwelling,” she mentioned.

She describes the state of affairs as “very alarming.”

“What occurs now to that data they have? I want to hear some solutions,” she mentioned.

The BBC was additionally unable to contact Atlas Biomed.

A telephone quantity listed for the corporate is lifeless. The BBC visited its places of work in London, however there was no signal of Atlas Biomed there.

The agency’s Instagram account, with over 11,000 followers, was final up to date in March 2022. Its ultimate publish on X was in August the identical 12 months.

It shared a publish on Fb in June 2023, however didn’t reply to any of the feedback – which had been full of individuals complaining about being unable to contact it or entry their profiles.

The obvious disappearance of Atlas Biomed is a thriller – however it seems to have hyperlinks with Russia.

It’s nonetheless listed as an energetic firm with Firms Home, the place all UK-based companies should register. Nonetheless, it has not filed any accounts since December 2022.

It lists eight official positions – although 4 of its officers have resigned.

Two of the apparently remaining officers are listed on the identical handle in Moscow – as is a Russian billionaire, who’s described as a now resigned director.

Atlas Biomed’s registered workplace is close to London’s so-called Silicon Roundabout, one of many prime places within the UK for tech companies.

When the BBC visited, there was no signal of Atlas Biomed itself, however an organization registration agency based mostly within the constructing confirmed that it was a consumer of theirs, and legitimately used the handle as its personal.

This agency, in an e mail, claimed that it couldn’t put the BBC in contact with Atlas Biomed “for safety functions”.

“We extremely recommend that you just contact them instantly,” it mentioned.

No-one from Atlas Biomed has responded to the BBC’s makes an attempt to contact it.

Cybersecurity professional Prof Alan Woodward mentioned the obvious hyperlinks to Russia had been “odd.”

“If individuals knew the provenance of this firm and the way it operates they may not be fairly so able to belief them with their DNA,” he informed the BBC.

None of this explains the place Atlas Biomed’s database of buyer DNA has ended up – and the BBC has seen no proof it’s being misused.

However Prof Carissa Veliz – writer of Privateness is Energy – factors out that DNA is arguably essentially the most useful private knowledge you have got. It’s uniquely yours, you’ll be able to’t change it, and it reveals your – and by extension, your loved ones’s – organic strengths and weaknesses.

Biometric knowledge is given particular safety below the UK’s model of GDPR, the information safety regulation.

“If you give your knowledge to an organization you’re utterly at their mercy and you’ve got to have the ability to belief them,” Prof Veliz mentioned.

“We shouldn’t have to attend till one thing occurs.”

Extra reporting by Graham Fraser