In a significant development for privacy rights in California, Attorney General Rob Bonta has issued a consumer alert directed at users of the genetic testing company 23andMe. The Oakland-based company has recently disclosed its financial difficulties, raising concerns about its ongoing viability as a business. In its securities filings, 23andMe acknowledged there is "substantial doubt" regarding its ability to continue operating.
Given the sensitive nature of the genetic data accumulated by 23andMe, Attorney General Bonta is reminding Californians of their rights under the Genetic Information Privacy Act (GIPA) and the California Consumer Protection Act (CCPA). These laws empower consumers to direct companies to delete their genetic information. California residents interested in exercising these rights can do so by visiting the official 23andMe website.
“California has robust privacy laws that allow consumers to take control and request that a company delete their genetic data,” stated Attorney General Bonta. He emphasized the importance of considering these options, especially in light of 23andMe’s financial uncertainties. “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.”
If you are a 23andMe customer and wish to delete your account and personal information, follow these straightforward steps:
Log into your 23andMe account on their website. Navigate to the “Settings” section of your profile. Scroll to the section labeled “23andMe Data” at the bottom of the page. Click “View” next to “23andMe Data.” If you want a copy of your genetic data for personal storage, select 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.If you have previously opted to have your saliva sample and DNA stored by 23andMe but wish to change that preference, you can modify this setting from your account settings page, specifically under “Preferences.” This allows consumers to ensure that their biological samples are no longer retained by the company.
For those who initially consented to allow 23andMe and third-party researchers to utilize their genetic data for research purposes, it is possible to withdraw that consent. This can be managed through the account settings page under “Research and Product Consents.”
Under the provisions of the Genetic Information Privacy Act (GIPA), California consumers can not only delete their accounts and genetic data but also demand the destruction of their biological samples. Additionally, GIPA enables consumers to revoke any consent previously given to genetic testing companies concerning the collection, use, and disclosure of their genetic data after the initial testing is complete.
Furthermore, the California Consumer Protection Act (CCPA) grants consumers the right to request the deletion of personal information, which encompasses genetic data, from businesses that have collected such information. This empowers Californians to take control of their sensitive information in light of evolving privacy concerns.
As the landscape of genetic testing continues to evolve, understanding your rights and how to exercise them is crucial for protecting your personal data.
