23andMe Bankruptcy: What Happens to Your Genetic Data Now?

When a company holding your most sensitive personal information declares bankruptcy, knowing your legal rights becomes crucial. The recent 23andMe bankruptcy filing has created an urgent situation for millions of customers who shared their genetic data with the company, and legal experts are advising immediate action.

"This is precisely when having access to legal counsel makes all the difference," explains Ben Farrow, a LegalShield provider attorney with Anderson, Williams & Farrow, LLC in Alabama. "Most consumers don't realize how quickly their personal information can become a corporate asset during bankruptcy proceedings."

With over 14 million Americans having submitted DNA samples to 23andMe, this bankruptcy has significant privacy implications. In this article, I'll outline what's happening, why it matters, and the specific steps you should consider taking—with a focus on how legal guidance can help protect your most personal information during this time.

Your genetic data: More valuable than you might think

While many consumers treated 23andMe tests as novelty gifts to learn about ancestry or interesting genetic traits, the data collected represents something far more valuable. Your genetic information is:

• Permanent and unchangeable – unlike a password or credit card number, you cannot change your genetic code if it's compromised
• Highly personal – containing information about health predispositions, family relationships, and biological traits
• Potentially valuable to third parties – including pharmaceutical companies, insurers, and other commercial entities

The California Attorney General has already issued an urgent consumer alert to 23andMe customers, highlighting the gravity of the situation. Many users report that the company's website is experiencing slowdowns due to the volume of deletion requests being submitted.

Immediate steps to protect your genetic data

If you're a 23andMe customer, privacy experts and legal professionals recommend taking these steps as soon as possible:

1. Delete your account and data

Log into your 23andMe account and navigate to the account settings to begin the deletion process. Be aware that the company's website may be experiencing high traffic due to the volume of deletion requests.

“Fully deleting your account and removing every trace of your consumer relationship with a company may be the most effective method to protect your private information," said Wayne Hassay, a LegalShield provider attorney with Ohio-based Maguire Schneider Hassay, LLP. "But because you can never be certain deletion is complete, additional protective steps are crucial.”

2. Request sample destruction

In addition to deleting your account data, specifically request the destruction of your original DNA sample. This is typically a separate process from account deletion and can be found in your privacy settings.

3. Revoke research consent

Many users opted in to allow their genetic data to be used for medical research without fully understanding the implications. This consent can still be revoked through your account settings, which is crucial if you're concerned about how your data might be used in the future.

4. Document everything

Create a clear paper trail of all deletion requests and consent revocations:

• Take screenshots of confirmation pages
• Save confirmation emails
• Note the dates of all actions taken

This documentation could be invaluable if questions arise later about what happened to your data.

5. Download your data first (optional)

Before deleting, consider downloading a copy of your genetic information if you want to retain access to insights about your health and ancestry. This allows you to keep the information you've paid for while removing it from the company's databases.

6. Check for refund eligibility

If you recently purchased a kit, check if you're eligible for a refund despite the bankruptcy filing. The company may have revised its refund policy in light of recent events.

Legal protections vary by state

The legal protections available to consumers in this situation vary significantly depending on where you live. California leads with stronger consumer data privacy protections, while many other states have laws that lag behind technological developments.

“State laws may provide some protection, depending on where you live and your specific situation," explains Hassay. "California, for instance, has drawn considerable attention for its strong data privacy laws. However, laws vary greatly among states, and many have not explicitly addressed genetic privacy when it comes to companies that are not medical providers or insurers—leaving consumers in a troubling gray area.”

How legal services can help

Navigating data privacy concerns, especially during a corporate bankruptcy, can be challenging. Here's where legal guidance becomes invaluable:

For LegalShield members

1. Contact a LegalShield provider attorney immediately for personalized guidance on protecting your genetic data and privacy rights.

2. A LegalShield provider attorney can:

• Advise you on immediately deleting your personal data from 23andMe's website
• Guide you through the process of requesting destruction of your DNA sample
• Help you revoke any research consent permissions you may have given
• Assist with documenting all actions taken to protect your information
• Discuss potential legal options based on your state's privacy laws
• Draft a demand letter if necessary

Even if you've already taken steps to protect your data, a LegalShield provider attorney can help ensure you've covered all bases and properly documented your actions—creating an important paper trail should issues arise in the future.

How legal expertise protects you

Professional legal guidance can help anyone affected by this situation:

• Understand your state-specific data privacy protections
• Create appropriate documentation of your data deletion requests
• Know what rights you may still have even after data has been shared
• Plan for potential future implications
• Navigate the complexities of data ownership during bankruptcy proceedings

Looking beyond 23andMe: Digital privacy in today's world

The 23andMe bankruptcy situation serves as a crucial reminder that in our digital world, personal data—even something as intimate as genetic information—can become a commodity. As consumers, we must remain vigilant about who we trust with our information and understand the potential long-term implications of sharing our data.

"When information was harder to store, categorize and access this problem was not as apparent," notes Farrow. "Today it is very easy to search, find and use just about anything and the information no longer degrades. Your 8th birthday picture remains just the way it was the day you uploaded it."

For businesses, this situation underscores the importance of transparent data practices and clear communication with customers about how their information will be handled, both during normal operations and in exceptional circumstances like bankruptcy.

Key takeaways

• Act quickly: The window for taking action to protect your 23andMe data may be narrow
• Document everything: Create a clear paper trail of all deletion requests
• Know your rights: Legal protections vary by state, so understanding your specific protections is important
• Plan ahead: Consider how you'll approach sharing sensitive data in the future
• Seek professional legal guidance: Consider consulting with legal professionals about your specific situation

As we navigate this evolving landscape of digital privacy, staying informed and proactive remains our best defense against unwanted data exposure. The 23andMe bankruptcy won't be the last time consumers face questions about what happens to their data when companies change hands—being prepared with knowledge and resources is the best protection.

‍

Written by Elyse Dillard, Content Specialist at LegalShield. Elyse creates educational resources about legal and identity theft protection services. She works to make complex legal concepts more accessible to readers and has contributed to numerous articles on the LegalShield blog.

________________________________________

‍Pre-Paid Legal Services, Inc. (“PPLSI”) provides access to legal services offered by a network of provider law firms to PPLSI members through membership-based participation. Neither PPLSI nor its officers, employees or sales associates directly or indirectly provide legal services, representation, or advice. The information made available in this blog is meant to provide general information and is not intended to provide legal advice, render an opinion, or provide a recommendation as to a specific matter. The blog post is not a substitute for competent legal counsel from a licensed professional lawyer in the state or province where your legal issues exist, and you should seek legal counsel for your specific legal matter. Information contained in the blog may be provided by authors who could be a third-party paid contributor. All information by authors is accepted in good faith, however, PPLSI makes no representation or warranty of any kind, express or implied, regarding the accuracy, adequacy, validity, reliability, availability, or completeness of such information.