How to delete your 23andMe data and why you should do it now

23andMe/ZDNET

I was an early 23andMe user. While I knew a good deal about my family history -- primarily Scottish-Irish who came to the US in the aftermath of the 1845-52 Irish potato famine -- I wanted to know more. At first, 23andMe was useful, but now it's another story. 

Once a genetic testing trailblazer, 23andMe has filed for Chapter 11 bankruptcy. This came after years of financial instability, operational missteps, and growing concerns over customer data privacy. 

The company's collapse raises serious questions about the future of its vast troves of genetic data collected from more than 15 million customers, including my own records. We have no idea what will become of our records -- and that's not a comfortable feeling. 

Also: The best secure browsers for privacy: Expert tested

Founded nearly two decades ago, 23andMe gained popularity by offering at-home DNA testing kits that provided insights into ancestry, genetic traits, and potential health risks. At its peak in 2021, the company's market valuation exceeded $6 billion. However, in recent years, it's been declining rapidly. 

The company's attempted pivot into pharmaceutical research and drug development partnerships, including a high-profile collaboration with GlaxoSmithKline (GSK), never met expectations. This, in turn, led to declines in revenue,

The company's reputation also never recovered from the hit it took when a major data breach in October 2023 exposed user data for about half its users. The result? The company value, which hovered above $6 billion in 2021 after its IPO, was trading for less than $50 million last week before the bankruptcy filing with losses in its current fiscal year of $174 million.

This is a dead company walking. 

The bankruptcy has me worried about our data's security and its future use. In a stark warning, California Attorney General Rob Bonta urged customers to delete their data due to uncertainties about where the company might end up after it's sold. While 23andMe claims that shared data is anonymized, I have my doubts. 

Besides, there are no federal government regulations for genetic data held by direct-to-consumer companies such as 23andMe. Unlike the Health Insurance Portability and Accountability Act (HIPAA) that covers medical records, 23andMe's DNA data has no strong privacy safeguards. Customers who consented to research may find their data irreversibly tied to studies even after deletion requests.

What can you do? You can delete your data. Here's how. 

How to delete your data from 23andMe

You can download your raw 23andMe genetic data for personal storage. There are ways to use this data outside of 23andMe, but you should be wary of sites that ignore your privacy or nickel and dime you for analyzing your data. Some sites, including FamilyTreeDNA, MyHeritage, GEDmatch, and Living DNA, enable you to upload your 23andMe data. Ancestry, the biggest of the genetics/family history services, does not accept 23andMe data.  

Also: Have a genealogy mystery? How I used AI to solve a family puzzle

Gather your data:Log into your account.Go to your account's "Settings" section.Scroll down to "23andMe Data" and select "View."Choose the option to download your data.

 2. Delete your account:

Log into your account.Navigate to "Settings" and scroll down to "23andMe Data."Click "Permanently Delete Data."Confirm your request via an email sent by 23andMe. Once confirmed, the deletion process begins automatically.

3. Destroy your genetic sample:

If you opted for sample storage, revoke this preference in your account settings under "Preferences." Request that your saliva sample be discarded.

4. Revoke research consent:

Withdraw consent for research use of your genetic data under "Research and Product Consents" in your account settings.

While deleting your account removes most personal information from 23andMe's databases, some data may still be retained due to legal obligations or prior research consent. This includes information such as your sex, date of birth, and genetic information, even after they're "deleted."  Genotyping labs may hold onto anonymized genetic information for up to three years after deletion requests. If you've previously agreed to let your genetics be used for medical research -- I did -- some of your genetics data will linger on for years to come. 

Also: All your Alexa recordings will go to the cloud soon, as Amazon sunsets Echo privacy

That said, if you value privacy and control over your DNA data, it's still a good idea to delete your account as soon as possible.

Stay ahead of security news with Tech Today, delivered to your inbox every morning.