I gave my DNA to monitoring firm

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

Atlas Biomed, which has workplaces in London, provided to offer insights into folks’s genetic make up in addition to their predisposition to sure diseases.

Nonetheless, customers are not in a position to entry their personalised experiences 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 Data Commissioner’s Workplace (ICO), has confirmed it has acquired a criticism about Atlas Biomed.

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

Consultants say it exhibits how customers of DNA-testing providers can discover themselves “fully on the mercy” of such firms in terms of defending very delicate information.

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 illnesses and even accidents, bearing in mind data she had supplied in an accompanying questionnaire.

She might entry her report on-line – which she checked sometimes – till someday the web site disappeared. She bought no reply when she contacted them to ask what had occurred.

“I don’t know what another person might 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 advised 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 might 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 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 useless. The BBC visited its workplaces 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 put up on X was in August the identical yr.

It shared a put up on Fb in June 2023, however didn’t reply to any of the feedback – which have 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. 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 similar deal with 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 shopper of theirs, and legitimately used the deal with 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 simply contact them immediately,” it mentioned.

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

Cybersecurity knowledgeable Prof Alan Woodward mentioned the obvious hyperlinks to Russia have 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 advised 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 beneficial private information you might have. It’s uniquely yours, you possibly can’t change it, and it reveals your – and by extension, your loved ones’s – organic strengths and weaknesses.

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

“Whenever you give your information to an organization you’re fully 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