I gave my DNA to tracking company

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 supply 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.

Clients of the agency describe the scenario as “very alarming” and say they need solutions about what has occurred to their “most private info”.

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

“Individuals have the fitting to anticipate that organisations will deal with their private info 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 corporations in terms 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, considering info she had supplied in an accompanying questionnaire.

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

“I don’t know what another person may do with [the data] but it surely’s probably the most private info… I don’t understand how comfy 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 residence,” she mentioned.

She describes the scenario as “very alarming.”

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

The BBC was additionally unable to contact Atlas Biomed.

A cellphone quantity listed for the corporate is useless. 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 remaining 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 – but it surely seems to have hyperlinks with Russia.

It’s nonetheless listed as an energetic 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 identical 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 areas within the UK for tech companies.

When the BBC visited, there was no signal of Atlas Biomed itself, however an organization registration agency primarily based within the constructing confirmed that it was a shopper of theirs, and legitimately used the tackle 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 counsel 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 knowledgeable 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 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 probably the most priceless private knowledge you’ve got. It’s uniquely yours, you may’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.

“Once you give your knowledge to an organization you might be 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.”

Further reporting by Graham Fraser