Delete 23andMe Data: A Step-by-Step Guide

23andMe's Recent Restructuring and Data Security Concerns

The DNA testing service 23andMe has experienced significant challenges recently, raising anxieties among its 15 million customers who have shared their personal genetic data with the organization.

Following a Chapter 11 bankruptcy filing in March, a competitive bidding process culminated on Friday with co-founder Anne Wojcicki successfully regaining control via her nonprofit, TTAM Research Institute, for a sum of $305 million.

Impact on the Genetic Testing Industry and Privacy

These bankruptcy proceedings generated considerable disruption within the genetic testing industry and among those advocating for data privacy.

Experts in security and legislators have been advising customers to proactively secure their data in response to the unfolding events.

The company’s temporary CEO disclosed this week that approximately 1.9 million individuals, representing 15% of 23andMe’s user base, have already submitted requests for the deletion of their genetic data from the company’s systems.

Legal Challenges and Data Sales

The situation was further complicated last week when numerous states initiated legal action, contesting the sale of customer’s private data.

These lawsuits assert that 23andMe is legally obligated to secure explicit consent from customers before transferring or selling any personal information to a new owner or entity.

Protecting Your Genetic Information

Although the company’s policies prevent the complete removal of all genetic data – especially information potentially shared with research collaborators or retained in backup storage – individuals among the 15 million who entrusted their DNA to 23andMe can still take important measures.

These steps can help protect their privacy and reduce potential exposure of their sensitive genetic information.

Actions You Can Take

• Consider requesting deletion of your data from 23andMe’s servers.
• Understand that complete data removal may not be possible due to existing data sharing and backup protocols.
• Stay informed about ongoing legal developments and company policy changes.

Deleting Your 23andMe Account Data

If you wish to remove your information from 23andMe, accessing your account is the first step. Following this, a specific series of actions must be completed.

Data Deletion Process

• First, go to the Settings area within your user profile.
• Next, locate and scroll down to the section titled 23andMe Data.
• Select the View option, then scroll further to find the Delete Data area.
• Finally, choose the Permanently Delete Data button to initiate the process.

A confirmation email will be sent to your registered email address by 23andMe. This email will contain a link to verify your data deletion request.

Prior to permanent deletion, you have the option to download a copy of your genetic information.

Data Retention Considerations

It’s crucial to understand 23andMe’s data retention practices, as outlined in their privacy policy. The company reserves the right to retain certain data points to fulfill legal requirements.

Specifically, the policy indicates that Genetic Information, along with your date of birth and sex, will be kept as mandated by applicable laws.

Furthermore, 23andMe will retain limited account and deletion request information, including your email address and related communications, for a defined period. This retention is for legal, contractual, audit, and compliance purposes.

In effect, while you can request data deletion, 23andMe may preserve some of your information for an indefinite duration.

Managing Your 23andMe Data: Destruction of Samples and Revocation of Research Consent

Individuals who have previously authorized 23andMe to retain their saliva sample and associated DNA have the ability to modify these preferences.

To withdraw your consent, access your 23andMe account settings and proceed to the Preferences area.

Furthermore, if you initially permitted 23andMe and external researchers to utilize your genetic data and sample for research purposes, you can retract this authorization within the Research and Product Consents section of your account settings.

Although consent can be reversed, complete deletion of the stored information is not possible.

Detailed Steps for Revoking Access

The process involves navigating through your account settings to specifically address both sample storage and research participation.

• First, locate and access the Preferences section within your 23andMe account.
• Next, within Research and Product Consents, you can manage your permissions regarding data usage for research.

It’s important to note that while you can stop future research use, previously shared data cannot be retrieved.

Understanding Data Retention

23andMe retains samples and genetic information even after consent is withdrawn for ongoing research and potential future advancements.

This retention policy is outlined in their terms of service and privacy policy, which users agree to upon creating an account.

Therefore, users should carefully consider their preferences regarding data storage before initially submitting their samples.

Maintaining Family Data Privacy

Following a request for your personal data removal, proactively reach out to your family. It's crucial they also initiate similar requests, as the potential sale of data extends beyond individual DNA to encompass related individuals.

Furthermore, extend this encouragement to your friends. Ensuring all close contacts are aware and taking protective measures is vital for comprehensive data security.

Understanding the Wider Impact

The implications of data breaches aren't isolated. Information pertaining to one person can inadvertently expose vulnerabilities for their entire network of relatives and associates.

Data privacy is a shared responsibility, and collective action strengthens overall protection.

This article was initially published on March 25th and has been revised on June 11th to reflect the latest developments.