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We’re Losing Control of Our DNA — and No One’s Stopping It

By J.B. Branch

In 1951, a young Black mother named Henrietta Lacks went to Johns Hopkins Hospital for cancer treatment. Without her consent, doctors collected a sample of her cervical tumor. Those cells — later dubbed “HeLa” — would go on to fuel some of the most significant breakthroughs in modern science, from the polio vaccine to cancer treatments. Her story, long ignored, is now rightly taught in bioethics courses as a case study in medical injustice: a woman’s biological material used without consent, generating untold profits while her family was left in the dark for decades.

Her experience belongs to the past, but the warning it carries is as current as ever.

Pharmaceutical giant Regeneron announced plans to acquire 23andMe, a direct-to-consumer genetics company that filed for bankruptcy in March for $256 million. In doing so, Regeneron will gain access to what may be the most valuable part of the company: a genetic database of over 15 million people.

To be clear, this is not a one-to-one comparison to Henrietta Lacks. But the echoes are impossible to ignore. Biological information, this time in the form of consumer DNA, is being transferred, leveraged, and commodified with little regard for the people it belongs to. Once again, a fundamental question is being raised: who really owns our DNA?

When 23andMe launched, it promised to help people unlock their ancestry, uncover genetic risks, and better understand themselves. But many who mailed in their spit samples didn’t realize they were also giving up long-term control over their genetic information. Hidden in the fine print was a clause allowing the company to transfer data in the event of a sale. That clause is now being exercised and for millions of people, that digital handshake deal is coming due.

The result is a genetic fire sale. Consumers are not being asked to re-consent, opt in, or even weigh in. Many don’t even know it’s happening. Those who do and want to delete their data have reported being blocked by technical errors, glitches, and a system seemingly designed to stall. It’s like reaching for the fire exit only to find it jammed shut.

This moment should provoke outrage, but it should also provoke action.

There are currently no comprehensive federal laws that govern how companies collect, use, or sell genetic data. The Health Insurance Portability and Accountability Act (HIPAA) passed in 1996 regulates how medical providers and health insurance companies must protect patient privacy but doesn’t apply to a direct-to-consumer service like 23andMe. The Genetic Information Nondiscrimination Act (GINA) passed in 2008 only prevents employers and health insurers from misusing genetic information — but it says nothing about data sales or corporate profiteering. At best, a patchwork of state laws offers partial but inconsistent protections.

What’s even more disturbing: it’s not just your data. Genetic information is inherently shared. It contains information about your children, your siblings, your cousins. A single person’s decision to upload their DNA implicates entire family trees. In a 2023 breach that impacted nearly 7 million 23andMe users, hackers specifically targeted people of Chinese descent and Ashkenazi Jewish heritage. This isn’t just about privacy. It’s about power, discrimination, and the ability to weaponize identity.

The story unfolding with Regeneron’s acquisition of 23andMe is a flashing red warning light: our legal frameworks are failing to keep up with our technology. Without robust regulation, Americans are left with few rights over the most intimate parts of themselves and corporations are quietly consolidating ownership over the rest.

We must act. Federal legislation is urgently needed to enshrine basic rights around genetic data: the right to informed consent, the right to withdraw or delete data, and the right to know how your DNA is being used. Any company handling sensitive genetic material should be held to high standards of transparency, accountability, and respect.

The story of Henrietta Lacks reminds us of the consequences of silence and delay. We don’t need to repeat history to learn from it. Let’s not wait until it’s too late to demand something better for ourselves, and for the generations to come.