DNA testing company vanishes along with its customers’ genetic data
A DNA testing company that promised clients insights into their genetic disposition has suddenly disappeared. The BBC reports it tried several methods to reach the company but failed in this effort.
London offices are closed, nobody answers the phone, and clients are no longer capable of accessing their online records. All the company’s social media accounts haven’t been updated since 2023 at the latest.
The atlasbiomed.com domain appears to be inactive. Customers were only able to look at their test results online, these were not downloadable, so now they are not only unable to see them, but they also have no idea what has happened to that data.
Although there is no evidence that any of the data has been misused, it is worrying to not know who now has access to the data, especially now that the investigation shows that there might be ties to Russia.
While four out of eight company officers have resigned, two of those that remain are listed at the same address in Moscow. That happens to be the same address as that of a Russian billionaire, who is described as a now resigned director.
DNA testing has become so commonplace that many people have blindly participated without truly understanding the implications. It has always been a problem to figure out who you could trust with your genetic data. For some people it’s their cheapest chance of finding out whether they are affected by some genetic disorder.
Since those early days, we’ve had several warnings about how submitting your genetic data can go sideways.
In 2018, MyHeritage suffered a security incident which exposed the email addresses and hashed passwords of 92 million users.
In 2020, Ancestry was acquired by investment firm Blackstone for $4.7 billion, which raised questions about the potential commercialization of genetic data and its transfer to new owners.
And the ongoing saga of what happened at 23andMe is the clearest example of why people would be hesitant to submit genetic data. In 2023, cybercriminals put up information belonging to as many as seven million 23andMe customers for sale on criminal forums following a credential stuffing attack against the genomics company.
Since then all board members have resigned, except for CEO Anne Wojcicki who has stood by her plans to take the company private, raising again the subject of what happens to customer genetic data when a company is sold.
Data breaches happen to the best companies. So, even if a company has good intentions, there is still a risk of your genetic data being linked to your personally identifiable information (PII). This makes the information a treasure trove for advertisers, insurance companies, and Big Pharma.
All of this makes it very understandable that customers of Atlas Biomed are worried about where their data might end up.
Words of warning
The UK regulator, the Information Commissioner’s Office (ICO) has confirmed it has received a complaint about Atlas Biomed, saying in a statement:
“People have the right to expect that organizations will handle their personal information securely and responsibly.”
Unfortunately, we know that not all organizations will meet that expectation, so there are a few things you should keep in mind.
If you submit genetic material, research the company you want to trust with it thoroughly.
Only share the personal information you absolutely have to provide with the genetic testing company. Lie if you must and create a separate free email account so the information can’t be tied to your main account.
Make sure to familiarize yourself with the company’s privacy policy and opt out of sharing information where possible. Make sure to stay informed about any policy updates or changes from the company.
As a wise lady and one of my former editors once wrote:
“Many a friend and family member have scoffed at my warnings to stay away from consumer DNA testing kits, remarking that they have nothing to hide or that there’s no harm in releasing their DNA into the hands of researchers. I honestly hope they’re right.
I hope they never have to fear having their health insurance ripped away because of pre-existing conditions or an increased risk of developing certain diseases. I hope they aren’t inundated with marketing emails about cancer-preventative nutrition or the best new medicines to prolong the onset of Alzheimer’s. I sincerely hope they’re never targeted by racial-profiling police officers, denied a job by a prejudiced employer or buried in paperwork after having their identity stolen by a hacker. And I fervently hope they’ll never have to hide their genetic profile from a government hell-bent on ridding its country of a certain ethnicity or race.”
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