What Now? Tips for Former 23andMe Customers Concerned About Their Genetic Data
Ok, I just heard the news and have already received three messages today asking for my thoughts—so here are some basic things to consider.
If you’re one of the millions who used 23andMe’s genetic testing services, this moment raises legitimate concerns about what happens to your data now that the company has filed for bankruptcy and is exploring a sale of its assets.
Below are a few concrete steps you can take—and some reflections on what this moment reveals about how we treat sensitive data in an evolving marketplace.
1. Download Your Data (If You Want It)
Before deleting anything, you can choose to download your raw DNA file:
• Log into your account
• Go to Settings > 23andMe Data
• Click “View” and follow the steps to download your data
2. Delete Your Digital Genetic Profile
If you want to remove your genetic data:
• In the same Settings > 23andMe Data section, scroll down
• Click “Permanently Delete Data”
• Confirm deletion via the follow-up email
3. Destroy Your Stored Sample
If you had opted to let 23andMe store your saliva sample, you’ll need to update your settings:
• Go to your Preferences
• Change your storage option and request the destruction of your physical sample
What Could Happen in a Sale?
In bankruptcy, your data could be treated as a business asset. A new buyer—possibly with very different intentions—may gain access to the genetic data of millions. Although legal protections and the company’s privacy policy still apply for now, they could change quickly under new ownership.
What Are Your Rights?
23andMe’s data isn’t covered by HIPAA, since it’s not a healthcare provider. State consumer protection laws apply, but their strength and enforcement vary. California has already advised residents to delete their genetic data and samples, and others may follow suit.
The Larger Question
This situation invites a broader reflection: when we give away something as personal and permanent as our DNA, are we doing so within systems that honor the dignity and longevity of that choice? What does consent look like when a company changes hands or dissolves?
For now, the priority is clear: act swiftly, be informed, and recognize that while technology may advance quickly, trust is much harder to rebuild.
Summary: What You Can Do Now
• Download your data if you want to keep it
• Delete your digital records from the platform
• Request destruction of your physical sample
• Stay alert for updates about the sale and privacy policy changes
More than a business story, this is a reminder of how intimately data is tied to identity—and why it deserves deeper reflection and stronger protection.
Dr. Salim Afshar
