You’ve probably heard the name Henrietta Lacks. Or maybe you’ve just heard of HeLa cells—those “immortal” workhorses of modern science that have been used to test everything from the polio vaccine to the latest COVID-19 boosters. But for a long time, the world didn't know the woman. We knew the tool, not the person.
That changed because of Rebecca Skloot.
When Skloot published The Immortal Life of Henrietta Lacks in 2010, she didn't just write a biography. She cracked open a massive, uncomfortable conversation about race, poverty, and how the medical establishment treats the bodies of Black people. Honestly, it’s one of those rare books that actually changed the law. But even now, years later, the dust hasn't settled. In fact, as of early 2026, the legal and ethical fallout is more intense than ever.
Who was Henrietta Lacks, really?
Before she was a specimen, Henrietta was a mother of five. She was a tobacco farmer from Virginia who moved to Baltimore. In 1951, she went to Johns Hopkins Hospital—one of the few places that would treat Black patients at the time—because she felt a "knot" in her womb.
It was an aggressive form of cervical cancer.
During her treatment, a doctor named George Gey took a snippet of her tumor without telling her. He didn't ask. He just took it. At the time, this was "standard practice," but let's be real: "standard practice" in the 1950s was often deeply exploitative.
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Most human cells die quickly in a lab. Henrietta’s didn’t. They doubled every 24 hours. They were the first immortal human cell line. While Henrietta died a painful death at just 31 years old, her cells went on to live in every major research facility on the planet.
How Rebecca Skloot found the story
Rebecca Skloot first heard about HeLa in a biology class when she was 16. Her teacher mentioned the cells came from a Black woman, but that was it. No name. No history.
That mystery stuck with her.
Years later, as a journalist, she spent a decade chasing the truth. It wasn't easy. The Lacks family was rightfully suspicious of white reporters and doctors. They’d been burned before. Scientists had even come back to the family in the 1970s to take blood samples—not to help them, but to further "fix" the HeLa contamination issues in labs. The family thought they were being tested for the cancer that killed their mother.
Building trust with Deborah Lacks
The heart of the book is the relationship between Skloot and Henrietta’s daughter, Deborah Lacks.
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Deborah was obsessed with knowing her mother. She didn't want money as much as she wanted answers. Was her mother's soul trapped in a test tube? Did it hurt when scientists injected her cells with toxins? Skloot didn't just interview Deborah; she became her partner in a decade-long detective hunt. They traveled to tiny towns in Virginia, dug through basement archives, and eventually saw Henrietta’s cells under a microscope together.
The 2026 update: The lawsuits finally arrive
For decades, the big question was: "Why is the Lacks family still living in poverty while biotech companies make billions off Henrietta’s cells?"
Things are finally shifting.
In August 2023, the Lacks estate settled a massive lawsuit against Thermo Fisher Scientific. They argued the company was "unjustly enriched" by using HeLa cells without consent. Then, in 2024 and 2025, the family turned their sights on other giants like Novartis and Viatris.
The argument is simple: You are still selling her "stolen" material. Therefore, you owe the estate.
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Why this isn't just about the past
We often talk about the Henrietta Lacks and Rebecca Skloot connection as a historical tragedy. But it’s a living issue.
- Informed Consent: Because of this case, "The Common Rule" (the federal regulations for protecting human research subjects) has been scrutinized and updated.
- Genetic Privacy: In 2013, when scientists published the HeLa genome without the family's permission, it sparked a whole new firestorm. Now, the NIH has a special committee—including Lacks family members—that has to approve any research using that genomic data.
- Medical Trust: Many Black Americans cite the Lacks story (alongside the Tuskegee Syphilis Study) as a reason for their skepticism of the healthcare system.
What most people get wrong
A common misconception is that George Gey, the doctor who first cultured the cells, got rich. He actually didn't. He gave the cells away for free to any scientist who wanted them. He wanted to cure cancer.
The "villains" here aren't necessarily the individual doctors from 1951—though their lack of consent was wrong—but the systemic way the biotech industry turned a human being into a commodity without ever looking back at the family she left behind.
Practical takeaways for today
If you’re a patient, a student, or just someone who cares about ethics, here’s what the Henrietta Lacks story means for you right now:
- Read the paperwork: When you have surgery or a biopsy, you usually sign a form that says the hospital can keep "excess tissue" for research. You have the right to ask what happens to it.
- Support The Henrietta Lacks Foundation: Rebecca Skloot used a portion of her book proceeds to start a foundation that provides grants for the healthcare and education needs of the Lacks family and others like them.
- Check the source: If you work in a lab, acknowledge the provenance of your materials. HeLa isn't just a label; it’s a person.
The collaboration between Henrietta Lacks (through her cells) and Rebecca Skloot (through her words) forced the world to see the human cost of scientific progress. It’s a story that hasn't ended—it’s just entering a new chapter of accountability.
To stay informed on this evolving story, you should monitor the National Institutes of Health (NIH) HeLa cell data use agreements and follow the ongoing litigation in the Maryland District Court regarding the Lacks estate. Understanding these legal precedents is crucial for anyone involved in bioethics or the biotech industry today.