Introduction
Picture this. You spit into a tube, send it off, and get back insights about your ancestry or health risks. Sounds cool, right? But now imagine that the very same genetic data is bought by a big pharmaceutical company. Suddenly, your personal DNA is no longer just about you. It’s about developing new drugs and treatments for millions. This is not just imagination. In May 2025, Regeneron Pharmaceuticals bought a major part of 23andMe for $256 million. This deal sparked a lot of questions about privacy. Who really owns your genetic data? And how safe is it now?
Let’s explore the privacy risks that come with genetic data after this big acquisition and learn some important lessons from 23andMe’s journey.
What Actually Went Down with the Regeneron-23andMe Deal
23andMe became famous by offering everyday people the chance to learn about their genes from a simple saliva test. Millions jumped on board for fun or to discover health risks. But in 2023, 23andMe hit rough waters. They faced a major data breach affecting millions of users and financial troubles pushed them into bankruptcy.
Enter Regeneron, a pharmaceutical giant known for its innovative drug research. They bought 23andMe’s personal genome service and access to a huge genetic database made up of over 15 million users. This genetic treasure trove is incredibly valuable for drug discovery. But it also means your genetic data now serves a very different purpose — from personal insights to powering pharmaceutical research.
Interestingly, 23andMe’s telehealth arm, Lemonaid Health, stayed independent. So users’ health data and genetic data got split between two very different companies. This switch raised serious concerns about what happens to the privacy of millions of people’s most intimate information.
Why Your Genetic Data Is So Sensitive and Valuable
Your DNA is your unique biological code. Unlike passwords or credit cards, you can never change it. This makes genetic data very different and very sensitive. It holds secrets about your health, your risks for diseases, and even your family history. If this data falls into the wrong hands or is misused, it can affect not just you but your relatives too.
This is why genetic data deserves the highest privacy protections. Once compromised, there’s no going back.
The 23andMe Data Breach: A Privacy Warning Sign
The 2023 data breach at 23andMe exposed the personal genetic data of nearly 7 million people. Hackers got access to details that should have been locked up tight. This incident highlighted some big problems:
First, the company didn’t have strong enough security measures to keep this one-of-a-kind data safe. Second, they were slow to inform users, leaving people in the dark when they needed to act quickly. Lastly, there just weren’t enough laws in place to protect consumer genetic data at the time.
This breach was a big red flag for everyone. It showed how critical it is for companies to take extra steps to protect genetic data — not just treat it like any other data.
The Privacy Risks That Got Bigger After the Acquisition
When Regeneron stepped in, it opened up a whole new set of privacy questions.
One of the biggest worries is the change in who controls the data. People shared their genetic info with 23andMe thinking it was mostly for personal use. Now Regeneron’s goal is drug research and development, which might mean data gets shared with partners, licensed, or used in ways people never imagined.
Consent also becomes a huge gray area. Did users really agree to this? Most genetic data agreements are buried in complicated terms and conditions that few read.
There’s also the fear of genetic discrimination. While some laws exist to stop insurance companies or employers from misusing genetic info, gaps remain. What if a life insurer uses your DNA to deny coverage? What if employers decide not to hire based on your genetic risks?
Finally, with data sometimes crossing borders for research, differences in privacy laws between countries make things even messier.
The Legal Landscape: Where Does Genetic Data Stand?
In the United States, there is no single law that covers genetic data completely. For example, the Genetic Information Nondiscrimination Act or GINA prevents discrimination in health insurance and jobs but doesn’t protect against issues like life insurance or housing discrimination.
The Health Insurance Portability and Accountability Act or HIPAA protects medical data but doesn’t apply well to companies like 23andMe, which aren’t traditional healthcare providers.
Meanwhile, the European Union’s GDPR treats genetic data as very sensitive, requiring clear consent and strict rules on how it can be used. India’s Digital Personal Data Protection Act is promising but still new and doesn’t specifically cover genetic data yet.
Real-Life Examples That Show What’s Possible
Take the UK Biobank, for instance. It has transparent rules and strong consent from participants, setting a great example for protecting genetic data while enabling research.
On the flip side, AncestryDNA once faced backlash for sharing data with law enforcement without users’ clear consent. This highlighted how important it is to be upfront about data use.
Even Apple Health Records shows how tech companies can give users control and transparency over their data — something pharma companies should consider seriously.
How Can We Protect Genetic Privacy Going Forward?
There are some clear steps to take. First, companies must make consent simple and honest. People need to understand exactly how their data will be used.
Second, there should be independent watchdogs or regulators watching over how pharma handles this data to prevent misuse.
Third, security has to be next-level. Strong encryption, anonymizing data, and regular security checks can help stop breaches.
Fourth, lawmakers need to update and create specific laws that protect genetic data fully.
And lastly, users should have the power to control their data — including options to delete it or revoke consent anytime.
Conclusion: Privacy Is a Promise, Not Just a Policy
The Regeneron and 23andMe deal is a wake-up call. It shows how genetic data is now a hot commodity, but with that comes big privacy responsibilities. Protecting our DNA is about more than just laws; it’s about trust and respect for what makes us human.
If you want to stay in the know about how privacy, data security, and tech are evolving in fast-changing fields like genetics, check out courses with CourseKonnect. They help you understand these complex issues so you can stay ahead and make smarter decisions.
