What Happened to 23andMe and How to Protect Your Genetic Data
Recently, DNA testing service 23andMe made headlines when it filed for bankruptcy protection in March, raising concerns about the fate of the genetic data of its 15 million customers. The company’s bankruptcy led to a series of events, including a sale to pharmaceutical giant Regeneron for $256 million and a subsequent bid from TTAM Research Institute, a nonprofit organization led by 23andMe’s co-founder and former CEO Anne Wojcicki.
Following the bankruptcy filing, security experts and lawmakers advised customers to take steps to safeguard their data. In a recent House Oversight Committee hearing, 23andMe’s interim chief executive Joseph Selsavage revealed that 1.9 million customers, representing 15% of its customer base, have requested to delete their genetic data. Additionally, more than two dozen states have sued 23andMe to challenge the sale of customers’ private data, arguing that explicit consent should be obtained before selling such information.
How to Protect Your 23andMe Data
If you’re a 23andMe customer looking to protect your genetic data, here are some steps you can take:
- Navigate to the Settings section of your profile.
- Scroll down to the 23andMe Data selection.
- Click on the View option and locate the Delete Data section.
- Select the Permanently Delete Data button.
After initiating the deletion process, you will receive an email from 23andMe with a confirmation link. It’s important to note that while you can delete some of your data, 23andMe may retain certain information, such as genetic information, date of birth, and sex, for legal compliance purposes.
Revoking Permission for Research and Checking in with Family
If you previously consented to having your DNA sample and data stored by 23andMe for research purposes, you can revoke this permission in your account settings. Additionally, you can withdraw consent for your data to be used by third-party researchers in the Research and Product Consents section of your account.
After taking these steps, it’s crucial to communicate with your family members and encourage them to protect their data as well. Since genetic information can impact not only the individual but also their relatives, ensuring that everyone is informed and taking precautions is essential.
As the situation continues to unfold, it’s vital to stay informed and proactive in safeguarding your genetic data. By following these steps and staying vigilant, you can protect your privacy and ensure the security of your personal information.
This article was originally published on March 25 and updated on June 11 with the latest information.
