Attorney General Sounds Alarm on Genetic Privacy as 23andMe Seeks Buyer

HELENA – In response to the recent bankruptcy announcement by 23andMe, Montana Attorney General Austin Knudsen is urging state residents to exercise caution with their genetic data. The Attorney General emphasized the importance of understanding and invoking their legal rights regarding the deletion and protection of their genetic information.

On March 23, 23andMe disclosed it was filing for bankruptcy and is currently seeking a buyer. This major development triggers concerns about the handling and security of genetic data held by the company. Under Montana law, DNA testing companies such as 23andMe must secure explicit consent from consumers before selling or using genetic data for research. Furthermore, consumers have the right to request the deletion of their genetic data and the destruction of any biological samples they have provided.

The Montana Department of Justice, through its Office of Consumer Protection, has issued guidance on how individuals can remove their genetic data from 23andMe databases safely and permanently. Also included are instructions on revoking consent for the use of genetic data in research. To delete your data, users are advised to log into their website profile, download a personal copy for safekeeping, and then navigate through account settings to permanently eliminate their genetic information from company records. The steps provided by the MT DOJ also include how to revoke permissions previously granted for research purposes.

To delete genetic data from 23andMe:

1. Log into your 23andMe account on their website.
2. Go to the “Settings” section of your profile.
3. Scroll to a section labeled “23andMe Data” at the bottom of the page.
4. Click “View” next to “23andMe Data”
5. 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.
6. Scroll to the “Delete Data” section.
7. Click “Permanently Delete Data.”
8. Confirm your request: You’ll receive an email from 23andMe; follow the link in the email to confirm your deletion request.

To destroy your 23andMe test sample:

If you previously opted to have your saliva sample and DNA stored by 23andMe, but want to change that preference, you can do so from your account settings page, under “Preferences.”

To revoke permission for your genetic data to be used for research:

If you previously consented to 23andMe and third-party researchers to use your genetic data and sample for research, you may withdraw consent from the account settings page, under “Research and Product Consents.”

Attorney General Knudsen’s call to action reflects the growing concerns over the privacy of genetic information and the implications of such data being mishandled, especially in the context of a company facing financial instability. Montana residents are strongly encouraged to review their data-sharing consents and understand the rights provided to them under state law to ensure their genetic information is protected during this transition period.