CALIFORNIA – California attorney general Rob Bonta issued a consumer alert, March 21, reminding 23andMe customers of their right to delete genetic data.
The California-based company filed for Chapter 11 bankruptcy protection in the U.S. to facilitate its sale as a business valued at $50 million.
In November, 23andMe announced they would be reducing their workforce by 40% – 200 employees and discontinuing further development of all its therapeutics programs in efforts to streamline operations and reduce costs.
The company also announced its cofounder and CEO Anne Wojcicki has stepped down from her leadership role after unsuccessful attempts by the company to sell itself to potential buyers.
Misusing genetic information can impact access to healthcare, employment, and other rights
23andMe has amassed a customer base of over 15 million individuals, making it one of the largest consumer genetic testing companies in the world.
When a company files for bankruptcy, its assets—including user data—may be sold to pay off creditors.
According to the Centers for Disease Control and Prevention (CDC), the misuse of genetic information can negatively impact a person’s access to healthcare, employment, and other rights.
Bonta said California has robust privacy laws that allow consumers to take control and request that a company delete their data.
“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,” said Bonta.
Steps to erase data
Under the Genetic Information Privacy Act (GIPA), California consumers can delete their account and genetic data and have their biological sample destroyed.
To Delete Genetic Data from 23andMe:
- Log into the 23andMe account on their website.
- Go to the “Settings” section of the profile.
- Scroll to a section labeled “23andMe Data” at the bottom of the page.
- Click “View” next to “23andMe Data”
- Download the data: If a user wants a copy of their genetic data for personal storage, they can choose the option to download it to their device before proceeding.
- Scroll to the “Delete Data” section.
- Click “Permanently Delete Data.”
- Confirm the request: The user will receive an email from 23andMe; they can follow the link in the email to confirm the deletion request.
To Destroy a 23andMe Test Sample:
If a user previously opted to have a saliva sample and DNA stored by 23andMe, but wants to change that preference, they can do so from the account settings page, under “Preferences.”
To revoke permission for genetic data to be used for research:
If a user previously consented to 23andMe and third-party researchers to use genetic data and samples for research, they may withdraw consent from the account settings page, under “Research and Product Consents.”
