Henrietta Lacks: How Her Cells Became One of the Most Important Medical Tools in History

The author of 'The Immortal Life of Henrietta Lacks' discusses the extraordinary ways medical research benefitted from an African American woman's cells—without her consent.

There isn’t a person reading this who hasn’t benefitted from Henrietta’s cells, code named HeLa, which were taken without her knowledge in 1950.

When I first called Henrietta’s daughter Deborah Lacks with hopes of writing a book, I had no idea how deep the story actually ran—that Henrietta’s children were also used in research without consent in the 70s, that their medical records had been released to the press and published without their permission, and so much more. Learning that is what inspired me to create The Henrietta Lacks Foundation, because I didn’t want to be another person who benefitted from the cells without doing something in return.

All I knew when I first called Henrietta’s family was that HeLa cells were of the most important advances in science, and that they’d come from a black woman who no one knew anything about. I was obsessed with the question of who Henrietta was for decades. In the excerpt below, you can read the beginning of that story—the moment I first learned about HeLa cells.

But since the book’s publication in 2010, many people have asked “What made you become so obsessed with her in that moment?”

There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her—a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is “Henrietta Lacks, Helen Lane or Helen Larson.”

No one knows who took that picture, but it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human cells—her cells, cut from her cervix just months before she died.

Her real name is Henrietta Lacks.

I’ve spent years staring at that photo, wondering what kind of life she led, what happened to her children, and what she’d think about cells from her cervix living on forever—bought, sold, packaged, and shipped by the trillions to laboratories around the world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.

There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.

I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen and sitting in a community college biology class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector. He pointed to two diagrams that appeared on the wall behind him. They were schematics of the cell reproduction cycle, but to me they just looked like a neon-colored mess of arrows, squares, and circles with words I didn’t understand, like “MPF Triggering a Chain Reaction of Protein Activations.”

I was a kid who’d failed freshman year at the regular public high school because she never showed up. I’d transferred to an alternative school that offered dream studies instead of biology, so I was taking Defler’s class for high-school credit, which meant that I was sitting in a college lecture hall at sixteen with words like mitosis and kinase inhibitors flying around. I was completely lost.

Yes, Defler said, we had to memorize the diagrams, and yes, they’d be on the test, but that didn’t matter right then. What he wanted us to understand was that cells are amazing things: There are about one hundred trillion of them in our bodies, each so small that several thousand could fit on the period at the end of this sentence. They make up all our tissues—muscle, bone, blood—which in turn make up our organs.

Under the microscope, a cell looks a lot like a fried egg: It has a white (the cytoplasm) that’s full of water and proteins to keep it fed, and a yolk (the nucleus) that holds all the genetic information that makes you you. The cytoplasm buzzes like a New York City street. It’s crammed full of molecules and vessels endlessly shuttling enzymes and sugars from one part of the cell to another, pumping water, nutrients, and oxygen in and out of the cell. All the while, little cytoplasmic factories work 24/7, cranking out sugars, fats, proteins, and energy to keep the whole thing running and feed the nucleus. The nucleus is the brains of the operation; inside every nucleus within each cell in your body, there’s an identical copy of your entire genome. That genome tells cells when to grow and divide and makes sure they do their jobs, whether that’s controlling your heartbeat or helping your brain understand the words on this page.

Defler paced the front of the classroom telling us how mitosis—the process of cell division—makes it possible for embryos to grow into babies, and for our bodies to create new cells for healing wounds or replenishing blood we’ve lost. It was beautiful, he said, like a perfectly choreographed dance.

All it takes is one small mistake anywhere in the division process for cells to start growing out of control, he told us. Just one enzyme misfiring, just one wrong protein activation, and you could have cancer. Mitosis goes haywire, which is how it spreads.

“We learned that by studying cancer cells in culture,” Defler said. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS.

Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before she died, a surgeon took samples of her tumor and put them in a petri dish. Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.

“Henrietta’s cells have now been living outside her body far longer than they ever lived inside it,” Defler said. If we went to almost any cell culture lab in the world and opened its freezers, he told us, we’d probably find millions—if not billions—of Henrietta’s cells in small vials on ice.

Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease; and they’ve been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers. Their chromosomes and proteins have been studied with such detail and precision that scientists know their every quirk. Like guinea pigs and mice, Henrietta’s cells have become the standard laboratory workhorse.

“HeLa cells were one of the most important things that happened to medicine in the last hundred years,” Defler said.

Then, matter-of-factly, almost as an afterthought, he said, “She was a black woman.” He erased her name in one fast swipe and blew the chalk from his hands. The class was over.  As the other students filed out of the room, I sat thinking, That’s it? That’s all we get? There has to be more to the story.  I followed Defler to his office. “Where was she from?” I asked. “Did she know how important her cells were? Did she have any children?”

Decades After Henrietta Lacks' Death, Family Gets A Say On Her Cells

The family of the late Henrietta Lacks finally got the chance to weigh in on how scientists use cells taken from her — without consent — more than 60 years ago.

The National Institutes of Health and the Lacks family have agreed to give scientists access to the genetic sequence of the cells, with some restrictions to safeguard her relatives' privacy. NIH Director Dr. Francis Collins described the agreement covering these so-called HeLa cells Wednesday, and how it came to be in the journal Nature.

The situation, he says, shines a bright light on a rising ethical issue in biomedicine: How do researchers protect people's privacy when they donate samples for genomic sequencing and scientific experiments?

The guidelines governing this issue were drawn up in the 1970s. And they clearly lag behind the technology. The ability to decode a whole genome quickly and cheaply makes it virtually impossible to hide a donor's identity when they give specimens for research.

"Science moves forward, advances happen in biology based upon resources that have been donated," Collins tells NPR. "Policy reforms have to be undertaken in order to keep up with the science."

The same was true back in 1951 when Henrietta Lacks unwittingly made available to scientists one of the most useful tools in research: cells that replicate and grew indefinitely in the lab. These cells are among the most widely used in biomedical research worldwide.

At age 31, the African-American mother of five had an unusually aggressive form of cervical cancer. The doctors treating her passed a piece of her tumor along to researchers down the hall, without permission from her or her family.

Henrietta died shortly afterward. But her cells lived on and have helped scientists develop the polio vaccine, in vitro fertilization and an array of treatments for cancer and other diseases. More than 70,000 published scientific papers mention these cells.

These HeLa cells are so important that several laboratories have spent years trying to sequence their DNA.

Last March, German scientists published the HeLa genome — again without consent from Henrietta's family — and controversy erupted.

The scientists hadn't broken any laws. But they did trample on the Lacks family's privacy.

Hidden in the sequence is potential biomedical information about Henrietta's descendents, such as their risk for getting Alzheimer's disease or bipolar disorder.

"The cells contain within them the original information that Henrietta was born with," Collins says. "And it is possible to go back and discern some of the hereditary information, which, of course, is then information she may have passed on to her children and grandchildren."

The German group quickly apologized and took down the DNA sequence from the Web.

The NIH then set up a committee that included the Lacks family to figure out a way to publish the HeLa genome, while still respecting the family's privacy.

The committee agreed to provide the DNA sequence to researchers on a case-by-case basis. Scientists will apply to get access to the code, and a group at NIH that includes Collins and two members of the Lacks family will review each request.

The lawsuit the Lacks family has filed against Thermo Fisher alleges the company has made millions from mass producing her cells and selling a range of product lines derived from them to medical researchers and institutions. The legal claim against the company is one of unjust enrichment.

"It's an equitable concept that basically says that you can't be the beneficiary of some bad conduct and expect to profit from it,