DNA testing service 23AndMe has undergone serious upheaval in recent months, raising concerns for the 15 million customers who have entrusted their personal biological information to the company. After filing for Chapter 11 bankruptcy protection in March, the company became the center of the bidding war that ended Friday when co-founder Anne Wojcicki said he successfully controlled it for $355 million through the non-profit TTAM Research Institute.
The bankruptcy proceedings have sent shockwaves among the genetic testing industry and privacy advocates, urging security experts and lawmakers to take immediate action to protect their customers. The company’s interim CEO revealed this week that 1.9 million people, roughly 15% of 23andMe’s customer base, have already requested that genetic data be removed from the company’s servers.
Last week, the situation became even more complicated after more than 20 states filed lawsuits challenging the sale of clients’ personal data, claiming 23AndME must obtain express consent before transferring or selling personal information to new entities.
The company’s policy does not allow you to delete all traces of genetic data, particularly information that may already be shared with your research partner, but if you are one of the 15 million people who shared DNA with 23andMe, there are still meaningful steps you can take to protect yourself and minimize exposure.
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 relating 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.