DNA testing service 23ANDME filed for bankruptcy protection in March, raising concerns about what will happen to the genetic data of its 15 million customers.
Pharmaceutical Giant Regeneron announced in May that it was purchasing a genetic testing company for $256 million, following its bankruptcy auction. The company said it will maintain 23andMe privacy practices, but it said it will use 23andMe data to help it discover new drugs.
When 23AndMe filed for bankruptcy, security experts and lawmakers encouraged customers to take action to protect their data. This week, Joseph Selsavage, interim CEO of 23Andme, told lawmakers that 1.9 million people, or about 15% of their customer base, are demanding that genetic data be removed. Selsavage shared that number during a House Oversight Committee hearing where lawmakers scrutinized the company’s sales.
Also, more than 20 states sued 23andme this week to challenge the sale of private data from customers. The state argues that before selling data, it must obtain express consent from customers.
If you’re one of the 15 million people who shared your DNA with 23andMe, we’ve outlined the steps you can take to protect yourself. You cannot delete all 23andMe data, but there are a few things you can control.
How to delete 23andMe data
To delete data from 23andMe, you must log in to your account and follow these steps:
Go to the Profile Settings section. Scroll to the selection labeled 23andMe data. Click the (View) option and scroll to the Deleted Data section. Select the button to permanently delete the (Data) button.
Next, you will receive an email from 23andMe using a link that allows you to confirm your deletion request.
You can choose to download a copy of the data before deleting it.
23Andme’s Privacy Policy states that the company and its labs will “preserve the genetic information, date of birth and gender necessary to comply with applicable legal obligations.”
The policy will continue. “23AndMe also retains limited information related to account and data deletion requests, including, but not limited to, email addresses, account deletion request identifiers, communications related to inquiries or complaints, legal, contractual obligations and/or legal claims, and limited communications related to the limited period required to defend the facility, monitoring and compliance of legal claims.”
This essentially means that 23andMe may hold some of your information for an unspecified period of time.
How to destroy 23andMe test samples and revoke permission to use data for research
If you previously chose to store saliva samples and DNA in 23andMe, you can change this setting.
To revoke your permission, go to the 23andMe Account Settings page and then go to your preferences.
Additionally, if you have previously agreed to 23andME and third-party researchers using genetic data and samples, you can withdraw your consent from your account setting research and product consent form.
You can reverse that consent, but there is no way to delete that information.
Check in with your family
Once you request data removal, it is important to check in with your family and encourage them to do the same, as their DNA is not the only one at risk of selling.
And while you’re in it, it’s worth checking in with your friends to ensure that all your loved ones are taking steps to protect their data.
This story was originally released on March 25th, and new information was updated on June 11th.