23andMe Customers Scramble to Delete Data, Seek Assurances After Bankruptcy -- WSJ

Dow Jones
25 Mar

By Alicia McElhaney

An array of 23andMe customers rushed to its website Monday, seeking to delete their genetic data from the DNA-testing company after its bankruptcy filing.

They faced long wait times or error messages and had to make repeated attempts to receive confirmation that their request had been received. Some sought unsuccessfully to delete the data of a deceased family member, and many expressed uncertainty about whether or how they would receive confirmation that the data had been deleted.

Several 23andMe users also said they have a heightened interest in what happens to their data due to a password hack at the company in 2023 that exposed information belonging to 6.9 million people.

Those whose requests for deletion were processed received an email from the company that said: "Your data is being deleted," followed by an added detail: "Your account will no longer be accessible, and will be deleted per your request."

Once a buzzy consumer startup, 23andMe filed for chapter 11 on Sunday and announced the resignation of its chief executive officer, Anne Wojcicki. Facing inflationary pressures and challenges in its efforts to use DNA data to help develop pharmaceutical medicines, the company is now trying to sell itself through bankruptcy.

Its customers, more than 15 million of whom provided 23andMe with their genetic information, saliva samples, and family and personal health history, are worried about what will happen to their data under a new owner.

23andMe has a standard process for data deletion, which requires users to confirm they have made a request after receiving an email confirmation. Some customers said that the process appeared straightforward, but they lost confidence in it when they faced delays on Monday.

Ted Weidner, an Indiana resident who has been a 23andMe customer for four years, said that he decided to delete his data on Monday because he is worried about his privacy in the event of a sale. The deletion process was slow, but he managed to get through it with little issue. Now Weidner said he is waiting on further confirmation from the company that his data has been deleted.

"I'm trying to audit the process because there's some sensitive information in there," he said.

23andMe's privacy policy, which shields customer data from employers, insurance companies, public databases and law enforcement, will continue to apply after it is sold, the company said in its open letter to customers Monday.

Given that customers agreed to the policy when they signed up for the service, the customer data isn't subject to HIPAA, or the Health Insurance Portability and Accountability Act, which protects personal health data, according to legal experts.

Instead, state laws in Illinois and California will govern data uses after a potential sale.

A new buyer could choose to change 23andMe's privacy policy, Sara Gerke, associate professor of law at the University of Illinois Urbana-Champaign, told The Wall Street Journal. Customers would still need to sign off on the changes, she said.

Don Bieber, an 88-year-old New York resident, spent three hours on Monday trying to delete his data, as well as that of two now-adult children he had guardianship over. Bieber said he is concerned about what would happen to that data after 23andMe is sold, and worried that his family would be unable to access that information if he died.

Over the course of three hours, he received several error messages before being able to successfully begin the deletion process.

Like others who deleted their data Monday, he received an email saying that the company is in the process of deleting his data, and that his account would be deleted per his request. Bieber, along with other customers who received this email, said he was worried about how long this process would take, and whether he would receive a second confirmation message once his data was deleted.

On Monday afternoon, Lucia McIntosh, 46, said that she had spent a couple of hours trying to delete her data. She said she hoped to download her information before deleting her account, but was met with an error message when she attempted to do so.

Customers who had more complicated situations, including those who accidentally sent 23andMe emails to their spam folders or who couldn't remember their passwords, said they faced hourslong customer service queues on Monday.

Write to Alicia McElhaney at alicia.mcelhaney@wsj.com

 

(END) Dow Jones Newswires

March 24, 2025 21:00 ET (01:00 GMT)

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