How to delete your 23andMe data amid company's bankruptcy
A bankruptcy filing by genetic testing and biotechnology company 23andMe and talks of a possible sale are shining a spotlight on what could happen to customers' personal data.
On March 23, 23andMe filed for Chapter 11 bankruptcy protection in federal court, explaining in a statement that it did so to "facilitate a sale process to maximize the value of its business."
Along with the bankruptcy filing, the company's CEO Anne Wojcicki resigned from her role, saying in a post on X that she resigned in order to independently bid on the company.
During the sale process, 23andMe says it plans to continue to operate as usual, noting in an open letter to customers that the bankruptcy filing "does not change how we store, manage, or protect customer data."
Still, the bankruptcy filing and uncertainty about a new owner for 23andMe have led to concerns over what could happen to the personal and genetic information of 23andMe's millions of customers.
Since its founding in 2006, 23andMe says it has sold more than 12 million DNA kits, which use a saliva sample to extract DNA that is then analyzed for health and ancestry reports, according to the company's website.
Here are six questions answered.
1. How do I delete my data from 23andMe?
23andMe customers may delete their account at anytime directly via their Account Settings, according to the company's website.
"If you participated in 23andMe Research, your Personal Information will no longer be used in any future research projects. If you asked us to store your genetic samples, they will be discarded. We will retain limited information about you, including records of this deletion request, and other information as required by law and otherwise described in our Privacy Statement," 23andMe states on its website.
To delete a 23andMe account:
- Log into your 23andMe account and go to "Settings."
- Scroll to the section "23andMe data" and click "View."
- Scroll to "Delete Data" and select "Permanently Delete Data."
- Look for an email from 23andMe at the email address linked to your account and confirm your request.
Customers who have trouble deleting their account may contact customercare@23andme.com for help.
2. How do I save my personal information on 23andMe?
23andMe recommends that users download their personal information saved in Account Settings before submitting the request to delete their account.
Once an account is deleted, it cannot be restored, and the customer loses access to the account, according to 23andMe.
When you are closing your account, there is an option to download your data to your device before proceeding.
3.How do I change my research consent and sample storage?
23andMe customers also have the right to change their preferences on how their genetic material is stored and used for research.
To delete a 23andMe test sample:
- Log into your 23andMe account.
- Go to "Settings."
- Choose "Preferences."
If you previously opted to allow 23andMe and third-party researchers to use your data for research, you may withdraw consent by going to the "Preferences" section under "Account Settings," according to the company.
4. What happens to my 23andMe data if the company is sold?
In the event of a bankruptcy or sale, a user's 23andMe data can go to a new company or be sold in bankruptcy, Anya Prince, a professor at the University of Iowa College of Law with research interests in health and genetic privacy, told ABC News previously.
23andMe said in its open letter to customers that it plans to prioritize customer data privacy throughout the sale process.
"Any buyer will be required to comply with applicable law with respect to treatment of customer data," the company said. "Our users' privacy and data are important considerations in any transaction, and we remain committed to our users' privacy and to being transparent with our customers about how their data is managed."
The company's current privacy statement is available to read here.
Prince noted that once a new buyer is in place, the details of the company's privacy policy can be changed.
"The privacy policy also says that the new company has to follow the existing privacy policy, which sounds great, but the existing privacy policy also says that it can be changed at any time," Prince told ABC News. "So, the new company could adopt the same privacy policy and then change it in ways that maybe the customers don't like."
5. Is the genetic data collected by 23andMe protected in the same way as health records?
No. 23andMe is considered a direct-to-consumer genetic testing company, and transactions with the company are considered commercial, not medical.
Because 23andMe is not a medical company, customers' personal information is not protected under the HIPAA Privacy Rule, which affords privacy protections to health records.
6. What have public officials said about 23andMe's data amid the bankruptcy filing?
To date, at least two state attorney generals have reminded consumers of their right to delete data.
On Tuesday, New York Attorney General Letitia James urged 23andMe customers to "take action to protect their data."
"New Yorkers' genetic data is sensitive information that must be protected at all costs," James said in a news release. "23andMe's bankruptcy announcement is concerning and I am urging New Yorkers to take action to safeguard their data. New Yorkers can follow instructions offered by my office to delete their data or destroy any DNA samples held by 23andMe. Anyone experiencing issues deleting their information stored with 23andMe should contact my office."
California's Attorney General Rob Bonta issued a consumer alert for 23andMe customers on March 21 with steps on how to delete genetic data, destroy a test sample and to revoke permission for genetic data being used in research.
"California has robust privacy laws that allow consumers to take control and request that a company delete their genetic data," Bonta said in the alert. "Given 23andMe's reported financial distress, I remind Californians to consider invoking their rights and directing 23andMe to delete their data and destroy any samples of genetic material held by the company."
ABC News' Mary Kekatos contributed to this report.
