CONSUMER ALERT: Washingtonians data privacy rights following the 23andMe bankruptcy

OLYMPIA — Following 23andMe’s recent bankruptcy filing, the Attorney General’s Office reminds Washingtonians of their right to genetic data privacy and ability to request data deletion. 23andMe is a direct-to-consumer genetic testing company that collects and analyzes individual’s sensitive and unique genetic information.

On March 23, 23andMe filed for Chapter 11 bankruptcy. While the

company has said it will not make any changes to the ways it “stores, manages or protects” consumer data, its future is unclear. The company intends to find new ownership but there are no guarantees how new owners would run the company, which holds private genetic data for more than 15 million people.

With these recent developments, it is important for Washingtonians to know their rights to withdraw consent and request the deletion of their genetic information.

For instance, Washington state’s My Health My Data Act protects residents’ sensitive health data — including genetic data — from being collected, shared or sold without their consent or authorization. State law gives consumers the right to withdraw consent, request data deletion and verify whether their data has been shared or sold. Consumers can also obtain a list of all third parties who received their data.

Washingtonians can delete their 23andMe account and personal information with the following steps:

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.”

You can learn more about managing your 23andMe genetic data here.