23andMe bankruptcy: What data does it hold and can I delete it?

Home DNA tests have become a wildly popular way to help trace your family tree - but not everyone has stopped to think about the privacy implications. Image / 123rf

Major at-home testing company 23andMe has filed for bankruptcy.

The company, which has tested more than 15 million people’s genetic make-up using post-in saliva kits, announced that it had entered US bankruptcy protection in an attempt to sell.

It said that data privacy would be an “important consideration” but added that it was seeking to “maximise the value of its assets”.

But what does this mean for consumers who have used 23andMe in the past?

What data does 23andMe have on me?

If you post off a sample, 23andMe processes this through laboratory equipment to “genotype” it. Genotyping involves testing the DNA samples for hundreds of thousands of genetic markers that can reveal a person’s ancestral history as well as susceptibility to certain diseases. The company keeps the samples you have sent in, if you consented to this when setting up your test.

Profiles have an additional wealth of data submitted by users themselves: health conditions, lifestyle information and family history.

What will happen to it if 23andMe is sold?

The company’s privacy statement – which every customer has accepted – states that it may sell personal information as part of a sale process. “If we are involved in a bankruptcy, merger, acquisition, reorganisation or sale of assets, your personal information may be accessed, sold or transferred as part of that transaction,” it says.

The company’s privacy statement says any party acquiring the data would be bound by its privacy notice, which states that the data will not be used for targeted advertising or shared with insurers or employers.

Who is likely to buy it?

Anne Wojcicki, 23andMe’s founder, has made three attempts to buy the company from public shareholders but has been rejected three times by the company’s board. She plans to try again to buy the company as part of the bankruptcy process, and would be likely to continue to operate it as normal, rather than exploiting the data.

Pharmaceutical companies might also be interested. A proportion of 23andMe’s revenues come through a tie-up with GSK to use the company’s data to help design new drugs.

Can I delete my data?

Yes. When you delete your 23andMe account, the company will destroy all personal data associated with you, including genetic data. You can download your raw genetic data from the company’s website beforehand.

You can separately ask for your sample to be deleted – alongside deleting your account or separately. Privacy advocates have called for users to delete their data amid the company’s falling share price and growing speculation about its future.