'I gave my DNA to a testing company - then it vanished'

A DNA-testing steadfast appears to person ceased trading - without telling its customers what has happened to the highly delicate information they shared with it.

Atlas Biomed, which has offices successful London, offered to supply insights into people's familial marque up arsenic good arsenic their predisposition to definite illnesses.

However, users are nary longer capable to entree their personalised reports online and the institution has not responded to the BBC's requests for comment.

Customers of the steadfast picture the concern arsenic "very alarming" and accidental they privation answers astir what has happened to their "most idiosyncratic information".

The regulator, the Information Commissioner's Office (ICO), has confirmed it has received a ailment astir Atlas Biomed.

"People person the close to expect that organisations volition grip their idiosyncratic accusation securely and responsibly," it said successful a statement.

Experts accidental it shows however users of DNA-testing services tin find themselves "completely astatine the mercy" of specified companies erstwhile it comes to protecting precise delicate data.

Lisa Topping, from Saffron Walden, Essex, sent a saliva illustration to Atlas Biomed respective years ago, paying astir £100 for a personalised familial report.

As good arsenic telling her astir her DNA profile, it claimed to besides pass her astir her predisposition to diseases and adjacent injuries, taking into relationship accusation she had provided successful an accompanying questionnaire.

She could entree her study online - which she checked from clip to clip – until 1 time the website disappeared. She got nary reply erstwhile she contacted them to inquire what had happened.

"I don’t cognize what idiosyncratic other could bash with [the data] but it’s the astir idiosyncratic information… I don’t cognize however comfy I consciousness that they person conscionable disappeared," Lisa told me.

In 2023, Kate Lake from Tonbridge, Kent, paid Atlas Biomed £139 for a study it ne'er delivered.

It promised her a refund - past went silent, contempt her trying each means of interaction she could find.

"I conscionable ne'er heard backmost from anyone, it’s similar no-one was astatine home," she said.

She describes the concern arsenic "very alarming."

"What happens present to that accusation they person got? I would similar to perceive immoderate answers," she said.

The BBC was besides incapable to interaction Atlas Biomed.

A telephone fig listed for the institution is dead. The BBC visited its offices successful London, but determination was nary motion of Atlas Biomed there.

The firm’s Instagram account, with implicit 11,000 followers, was past updated successful March 2022. Its last station connected X was successful August the aforesaid year.

It shared a station connected Facebook successful June 2023, but did not respond to immoderate of the comments – which were afloat of radical complaining astir being incapable to interaction it oregon entree their profiles.

The evident disappearance of Atlas Biomed is simply a enigma - but it appears to person links with Russia.

It is inactive listed arsenic an progressive institution with Companies House, wherever each UK-based businesses indispensable register. However, it has not filed immoderate accounts since December 2022.

It lists 8 authoritative positions - though 4 of its officers person resigned.

Two of the seemingly remaining officers are listed astatine the aforesaid code successful Moscow - arsenic is simply a Russian billionaire, who is described arsenic a present resigned director.

Atlas Biomed's registered bureau is adjacent London's alleged Silicon Roundabout, 1 of the premier locations successful the UK for tech firms.

When the BBC visited, determination was nary motion of Atlas Biomed itself, but a institution registration steadfast based successful the gathering confirmed that it was a lawsuit of theirs, and legitimately utilized the code arsenic its own.

This firm, successful an email, claimed that it could not enactment the BBC successful interaction with Atlas Biomed "for information purposes".

"We highly suggest that you interaction them directly," it said.

No-one from Atlas Biomed has responded to the BBC's attempts to interaction it.

Cybersecurity adept Prof Alan Woodward said the evident links to Russia were "odd."

"If radical knew the provenance of this institution and however it operates they mightiness not beryllium rather truthful acceptable to spot them with their DNA," helium told the BBC.

None of this explains wherever Atlas Biomed’s database of lawsuit DNA has ended up - and the BBC has seen nary grounds it is being misused.

But Prof Carissa Veliz - writer of Privacy is Power - points retired that DNA is arguably the astir invaluable idiosyncratic information you have. It is uniquely yours, you can’t alteration it, and it reveals your – and by extension, your family’s - biologic strengths and weaknesses.

Biometric information is fixed peculiar extortion nether the UK’s mentation of GDPR, the information extortion law.

"When you springiness your information to a institution you are wholly astatine their mercy and you person to beryllium capable to spot them," Prof Veliz said.

"We shouldn’t person to hold until thing happens."

Additional reporting by Graham Fraser