When Rebecca Skloot walked into the Kimmel Cancer Center in Philadelphia last week to talk about The Immortal Life of Henrietta Lacks, she was riding a wave of positive reviews for the book she had been working on for nearly half her life. The Boston Globe had called it “a well-written, carefully researched, complex saga of medical research, bioethics, and race in America.” Salon termed it “a heroic work of cultural and medical journalism,” and the New York Times thought it “a thorny and provocative book about cancer, racism, scientific ethics and crippling poverty [that] floods over you like a narrative dam break.”
At the Kimmel Cancer Center (part of Thomas Jefferson University), the crowd was made up of scientists and physicians, many of whom knew Henrietta Lacks only as HeLa, for the cell line named after her unusual, fast-growing cells. Over the years, HeLa cells have been used for cancer research, to test the polio vaccine, unlock the secrets of DNA transcription, and thousands of other medical projects.
Among the crowd was Dr. Leonard Freedman, dean of research at Thomas Jefferson, whose lab invented a new tool for DNA research using HeLa. “You know, I used to do a lot of science with these cell lines,” Freedman said to this reporter just before the lecture. But the book was a revelation: “We knew the cells came from some woman, but we even had her name wrong. And we certainly didn’t know any of what’s in the book.”
The same was true for Dr. Edith P. Mitchell, a clinical professor of medicine and program leader in the school’s Gastrointestinal Oncology program (and a general with the Missouri National Guard. “My first exposure to HeLa cells occurred when I was a young student, and was told not to contaminate anything,” Mitchell explained, “because, and I quote, ‘Those HeLa cells will grow all over the place.’”
All of this, Mitchell added, made her eager to secure Skloot as the center’s lecturer for Black History Month. Some might find this a paradoxical choice, seeing Henrietta Lacks’s story as a prime example of the medical community’s injustices to African-Americans. (For more on this history, see Medical Apartheid by Harriet Washington, who helped advise Skloot on her book.) Mitchell had a different view: “What does all this have to do with Black History Month?” she asked the crowd. “I say it’s connected to our history—by which I mean,” she said, glancing pointedly at the mostly white faces, “the history of the human race.”
Skloot asked the audience of 200: “How many people in the room knew about Helen Lane, before today?” About 100 hands went up. “And how many have worked with HeLa cells?” Two dozen raised their hands.
Then Skloot began to trace the story of a young mother of five who came to a clinic at Johns Hopkins, in 1951 “the only hospital in Baltimore that would see black patients,” after discovering a lump on her cervix.
Back then, “informed consent” laws didn’t exist, she added. The only consent needed was the patient’s signature on a form granting Johns Hopkins permission “to perform any operative procedures that they may deem necessary in the surgical treatment of Henrietta Lacks.”
It was immediately clear that Lacks had a full-blown tumor. She was given the prescribed treatment of the time, a course of radiation. But her diagnostic lab sample soon took on a life of its own.
That specimen, Skloot explained, was sent somewhere having nothing to do with treatment: to cell biologist George Gey, inventor of the “roller drum” used in labs worldwide, who was in the process of gathering all the cervical-cancer cells he could find.
“Gey thought he could isolate cells that had characteristics that were only cancer,” said Skloot. “So he collected them, but until he got Henrietta’s, the cells just always died. Hers didn’t.”
In fact, they doubled every four hours. The manically reproducing cells behaved the same way in Lacks’s body: she died eight months after entering the clinic. But her cells now had their own rooms at Johns Hopkins, and Gey was beginning to publish the fact that he’d found and perfected the line he called HeLa. Soon every scientist wanted his own supply, and eventually facilities were built to mass-produce HeLa cells and ship them around the world.
“I first heard about the HeLa cells when I was 16, at community college taking a class for high school credit,” said Skloot. “My teacher said what all teachers said in those days: ‘There are these cells, there was this woman, her name was Henrietta Lacks, and she was black.’ And I was like, That’s it? That’s all we know? He told me to go find out some more and write an extra-credit paper about it,” she laughed. “About a year ago I sent him my manuscript for this book: ‘Hi, remember that paper I owe you?’”
It took Skloot nearly two years to gain the confidence of Henrietta’s daughter Deborah Lacks- Pullum, whose journey to understanding is the core of Skloot’s book.
“I was just the next in a line of white people who wanted something,” Skloot said, adding that she gained Lacks-Pullum’s trust only after she offered to include her on the quest, taking her on lab visits and field research. During the years that HeLa had become increasingly renowned—the first cells to go into space, the first whose genes were mapped—the family, back in Baltimore and Virginia, had been largely unaware that Henrietta’s cells had even survived.
Asked what the family thought of her book, Skloot said that “there was a lot of pain associated with the story to them, and there were certain parts they avoided—like accounts of her death. But I think it was also sort of cathartic.” Deborah Lacks-Pullum remained deeply traumatized for many years. After learning about the HeLa cells and the research it had facilitated, said Skloot, “she believed her mother’s soul was in these cells. She wondered, ‘How can my mother rest in peace, if you’re shooting her cells to the moon?’”
Other members of the family were, and are, passionately angry. “Her brothers became very angry when they knew the cells were being bought and sold,” said Skloot. She pointed out that any researcher in the hall that day could go online and buy a vial of HeLa for about $250, with other HeLa-derived products costing up to $10,000. Meanwhile, many members of the Lacks family are without health insurance. “They keep saying, ‘If our mother is so important, why can’t I get access to health care?’”
Skloot cautioned that the facts don’t support the media hype that something illegal has been done. Over the decades, she said, stories about the Lackses ran like much of the negative coverage of her book: Woman’s cells stolen, millions made, family still poor. But there’s no evidence of actual theft in a country where consent laws were hazy, she said—only a built-in structural injustice toward people without power.
“George Gey has been held up for decades as this guy who stole her cells, maybe didn’t treat her right,” said Skloot. On the other hand, some scientists have objected to the fact that the book raises ethical issues at all. “One stood up and told me it was irresponsible to tell the story, that this is going to give people the idea that they own their cells.” But Skloot refuses to see the story in cut-and-dried terms. “This has been held up as another Tuskegee,” she said, referring to the notorious forty-year syphilis study that used sharecroppers as its subjects, “and it’s just not.”
According to Skloot, even Lacks’s grandchildren don’t think so. Most of them are in their thirties, she said, “the first generation to have much schooling—one granddaughter is finishing up a masters’ in psychology. And they look at this whole thing from a very different perspective from their parents, saying things like ‘You can’t judge the 1950s from the ethics of today.’ They’re very proud to have come from her.” When the family came up to New York for a book-signing like this one, she said, “the room sort of erupted in cheers. All the scientists were saying to them, ‘This is what I did with the cells, this is what’s important,’ and asking them for autographs.”
With Roland Pattillo of Morehouse College, Skloot has set up the Henrietta Lacks Foundation to benefit the Lacks family. She spoke of one scientist who pledged to donate to the foundation: “‘A dollar every time I process a batch of these cells,’ he said. So I got a dollar and a dollar, and then he realized, ‘Whoa, this is going to add up!’”
Another potential source of compensation for the Lackses is a movie or TV adaptation, which would require producers to purchase not only rights from Skloot but ‘life rights’ from the family. The book has already sparked quite a bit of interest from studios, she said. Like Henrietta Lacks’s immortal cells, her story—complex, controversial, and needing to be told—is likely to be with us for some time to come.
First posted at Women’s Voices For Change.