23andMe: how to delete your genetic DNA data as company is 'on the brink' - steps to take

• 23andMe is reportedly facing an uncertain future. 
• The ancestry company, known for its spit test method, launched in the UK in 2014. 
• But it was hit by a major data breach in 2023 and its board of directors quit recently, save the CEO. 
• So, what will happen to your DNA if you handed it over? 

Remember that craze to find out who your ancestors were? It felt like during the early years of the millennium it was everywhere. 

Your mind is probably casting back to adverts for companies like Ancestry or even… 23andMe. If you gave into the curiosity and sent your DNA away to the latter, you may want to hold on to your hat. 

The company is having a rocky time of it, with The Atlantic reporting in a major piece recently that it is on the verge of having its stock “delisted” and that all the board of directors, bar the CEO, have quit, and NPR ran a headline earlier this month describing it as “on the brink”. The struggles of 23andMe is leaving many former users wondering what is going to happen to the DNA they handed over. 

What is going on with 23andMe? 

The company, which specialises in personal genomics and biotechnology, is going through a “downward spiral”, Kristen V. Brown reports for the Atlantic. It comes after 23andMe was hit by a massive data breach last year, with hackers stealing the data of around 7 million people - with Ashkenazi Jews and users of Chinese descent in particular targeted, according to Wired. 

Beyond the data breach, the company was rocked in late September by a full board resignation, which CBS News describes as “rare”, leaving only the CEO and co-founder Anne Wojcicki. It comes amid moves to take 23andMe private again, after its share price fell by 99% from its peak of $6bn (approx £4.5bn) in 2021 when it went public - NPR reports. 

23andMe is facing an uncertain future - how to delete your data. Picture: Getty Images/iStockphoto. | Getty Images/iStockphoto.

In the letter of resignation, the board wrote: “After months of work, we have yet to receive from you a fully financed, fully diligenced, actionable proposal that is in the best interests of the non-affiliated shareholders. We believe the Special Committee and the Board have provided ample time for you to submit such a proposal. That we have not seen any notable progress over the last 5 months leads us to believe no such proposal is forthcoming. The Special Committee is therefore unwilling to consider further extensions, and the Board agrees with the Special Committee’s determination.

“While we continue to wholeheartedly support the Company’s mission and believe deeply in the value of the personalised health and wellness offering that you have articulated, it is also clear that we differ on the strategic direction for the Company going forward. Because of that difference and because of your concentrated voting power, we believe that it is in the best interests of the Company’s shareholders that we resign from the Board rather than have a protracted and distracting difference of view with you as to the direction of the Company.”

According to NPR, one of the main issues 23andMe has faced is that many of its 15 million customers have used its services just once. They order the saliva test kit, send it away, get the results and then move on. 

What will happen to DNA the company has? 

But as the company continues to struggle, many former users are left wondering what will happen to the DNA gathered over the years? It initially launched in the US in 2006 and arrived in the UK in 2014 - with the BBC reporting at the time that the Medicines and Healthcare Products Regulatory Agency “can be used with caution”. 

A spokesman for 23andMe would not comment on what the company might do with its genetic treasure trove from customers when approached by NPR. However Andy Kill said: “For our customers, our focus continues to be on transparency and choice over how they want their data to be managed.” 

NPR also reports that around 80% of 23andMe had opted into allowing their genetic data to be used for medical research. The company had a prior agreement in place with pharmaceutical giant GlaxoSmithKline (GSK) that allows them to access this data to help develop new treatments. 

Can you delete your 23andMe data? 

Cybersecurity experts have recommended former and current 23andMe customers take steps to protect their data, NBC reports. Anya Prince, University of Iowa law professor and genetic privacy expert, told the US news site that customers are able to request the company to delete their genetic information under the terms of its privacy policy. 

Prince explained: “You have the ability to download data and delete your account if you're no longer interested.” If you did give the company the greenlight to use your DNA for medical research, you can reverse the consent, but you can’t take back any data that has already been shared. 

So, what steps do you need to take to delete your DNA data from 23andMe? On its website it explains: “If, at any time, you are no longer interested in participating in our Services, you may delete your 23andMe account directly within your Account Settings.” 

First you’ll need to log back into 23andMe, if you can remember your details that is. Then you can submit the deletion request online, the company will email you to confirm and once you have verified it the process will begin. Here’s the link to 23andMe’s website. 

Are you concerned about how much of your data is available on the internet, have you taken steps to protect it? Share your thoughts by email: [email protected].