The genetic testing company 23andMe recently filed for bankruptcy. That, along with prior data breaches, has caused many customers to be concerned about their personal genetic information. The attorney general of California issued an urgent appeal for customers to delete their genetic information.
What Is 23andMe?
23andMe is a biotechnology company offering personal genetic analysis through DNA testing. It gained popularity among people wanting to know detailed ancestry information. For others, it provided information about hereditary health risks and conditions.
As part of the 23andMe product, customers can allow their genetic data to be stored and shared for scientific research with the company and third-party researchers.
Concerns About Personal Data Security and the 2023 Breach
Since the company’s formation, there have been growing privacy concerns about customer data. The company maintains in its privacy statement that it does not share data with public databases, law enforcement, or insurance companies and only releases information with user permission.
In 2023, hackers accessed personal information from almost seven million profiles, with Jewish and Chinese customers being especially targeted. The hackers sold the customers’ personal, genetic, and ancestry information on the black market. In 2024, 23andMe subsequently settled a class action lawsuit for $30 million with the affected customers.
23andMe Files for Bankruptcy
The company recently filed for Chapter 11 bankruptcy protection. Chapter 11 bankruptcy is a court-supervised process where a company can restructure its debts but continue to operate its business. CEO Anne Wojcicki resigned from the company with the intention to acquire it as an “independent bidder.” However, there are concerns that whoever takes over the company will have access to the genetic data of over 15 million customers.
Urgent Consumer Alert From California’s Attorney General
The bankruptcy filing prompted California Attorney General Rob Bonta to recommend that Californians immediately delete their DNA data. Under California laws, such as the Genetic Information Privacy Act (GIPA) and California Consumer Privacy Act (CCPA), customers have the right to request the deletion of their genetic data.
The Attorney General provided the following deletion process to remove genetic data and permissions from 23andMe.
To Delete Genetic Data
- Log into your 23andMe.com account on their website.
- Go to the “Settings” section of your profile.
- Scroll to a section labeled “23andMe Data” at the bottom of the page.
- Click “View” next to “23andMe Data”
- Download your data: If you want a copy of your genetic data for personal storage, choose the option to download it to your device before proceeding.
- Scroll to the “Delete Data” section.
- Click “Permanently Delete Data.”
- Confirm your request: You’ll receive an email from 23andMe; follow the link in the email to confirm your deletion request.
To Destroy Your Genetic Sample
If you previously allowed 23andMe to store your saliva sample and DNA, you can change that preference under “Preferences” on your account settings page to destroy your test sample.
To Withdraw Permission for Genetic Data To Be Used for Research
If you previously allowed 23andMe and third-party researchers to use your sample and genetic research, you can withdraw the consent under “Research and Product Consents” in your account settings.
Protect Your Genetic Information
Given the risk of hacking and uncertain future ownership, consumers may want to delete their genetic data and personal information to protect their privacy. By doing so, they can ensure their personal information and data privacy remains secure and out of unauthorized hands.
However, the DNA testing company will retain some information, such as date of birth, sex, and email. Your data cannot be removed from any ongoing or past research studies. After account deletion, your information cannot be used for future research projects.
Related Resources
- Find a Consumer Protection Lawyer Near Me (FindLaw Lawyer Directory)
- Genetic Information Discrimination in the Workplace (FindLaw Learn About The Law)
- Guide to U.S. Data Privacy Laws (FindLaw Learn About The Law - Consumer Protection Law)
