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 folks’s genetic make up in addition to their predisposition to sure sicknesses.

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

Clients 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 Data Commissioner’s Workplace (ICO), has confirmed it has obtained a criticism about Atlas Biomed.

“Individuals have the precise to count on that organisations will deal with their private data securely and responsibly,” it mentioned in a press release.

Specialists say it exhibits how customers of DNA-testing providers can discover themselves “utterly on the mercy” of such corporations relating to 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 offered 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] nevertheless it’s essentially the most private data… I don’t know the way comfy I really feel that they’ve simply disappeared,” Lisa instructed 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 making an attempt each technique of contact she may discover.

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

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

“What occurs now to that data they’ve? I wish to hear some solutions,” she mentioned.

The BBC was additionally unable to contact Atlas Biomed.

A cellphone 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 submit on X was in August the identical 12 months.

It shared a submit 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 – nevertheless it seems to have hyperlinks with Russia.

It’s nonetheless listed as an lively firm with Corporations Home, the place all UK-based companies should register. Nevertheless, 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 similar tackle 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 corporations.

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 tackle as its personal.

This agency, in an electronic 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 straight,” it mentioned.

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

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

“If folks knew the provenance of this firm and the way it operates they won’t be fairly so able to belief them with their DNA,” he instructed 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 – creator of Privateness is Energy – factors out that DNA is arguably essentially the most precious private knowledge you’ve 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 underneath 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.”

Further reporting by Graham Fraser