Recent developments at DNA testing company 23andMe have sent shockwaves through the industry and raised serious privacy concerns for millions of users. After filing for Chapter 11 bankruptcy in March, the company became the focus of a fierce bidding war, culminating in co-founder Anne Wojcicki successfully reacquiring control through her nonprofit TTAM Research Institute for $305 million.
This upheaval has prompted urgent calls from privacy advocates, security experts, and lawmakers for customers to take action to protect their sensitive genetic data. In fact, the company’s interim CEO revealed that nearly 1.9 million people—about 15% of 23andMe’s customer base—have already requested their genetic information be deleted from the company’s servers.
Adding to the complexity, last week over two dozen states filed lawsuits challenging the sale of customer data. They argue that 23andMe must obtain explicit consent before transferring or selling personal genetic information to third parties. While some data may already be shared with research partners or stored in backups—meaning complete deletion isn’t always possible—there are still critical steps you can take to safeguard your privacy.
**How to Delete Your 23andMe Data**
If you want to remove your genetic information from 23andMe, follow these simple steps:
1. Log into your 23andMe account.
2. Go to the Settings section of your profile.
3. Scroll down to the “23andMe Data” section.
4. Click “View” and then find the “Delete Data” option.
5. Select “Permanently Delete Data.”
After submitting your request, you’ll receive an email with a link to confirm your deletion. You also have the option to download a copy of your data before deleting it, should you wish to keep a record.
**Important Privacy Caveats**
It’s crucial to understand that 23andMe’s privacy policy states the company and its labs will retain some of your data—such as genetic information, date of birth, and sex—as required by law. Additionally, limited information related to your account and deletion requests, including email addresses and communication records, may be stored for an unspecified period. This means that while your genetic data might be deleted from active servers, some information could remain in the company’s records for years.
**Revoking Consent and Destroying Your Sample**
If you previously opted to store your saliva sample or allow your DNA to be used for research, you can revoke these permissions. Visit your account settings and navigate to the Preferences section to withdraw consent. Keep in mind, while you can withdraw permission for research use, you cannot delete the genetic data or sample that has already been shared or stored.
**Protect Your Family’s Privacy**
After requesting data deletion, it’s wise to check in with family members who may have also shared their DNA with 23andMe. Their data could be at risk too, as genetic information is shared among relatives. Encourage loved ones to review their privacy settings and take similar steps to protect their personal information. Also, discuss with friends and family about the importance of safeguarding genetic data in today’s digital age.
By staying informed and proactive, you can better control your genetic information and protect your privacy amid ongoing changes in the genetic testing landscape.
