In a lecture punctuated with humor and more than a few tales of heartbreak, author Rebecca Skloot recently described her long, painstaking quest to tell the story of a poor black tobacco farmer named Henrietta Lacks, whose death in 1951 transformed the world of medical research.
Speaking on September 23 before a crowd of more than 1,000 in Elmhurst College’s Hammerschmidt Memorial Chapel, Skloot talked about discovering, researching and living the saga of Lacks and her family, as well as the medical history that was made with the discovery of Lacks’s cells. The book that resulted, The Immortal Life of Henrietta Lacks, spent more than two years on the New York Times bestseller list and has ignited wide discussions about bioethics and race.
Henrietta Lacks was a 31-year-old mother of five living in Baltimore when she learned she had cervical cancer. She sought treatment at Johns Hopkins Hospital, where doctors—without her knowledge or consent—harvested some of the cells that had killed her.
At the time, scientists had been trying to grow human cells outside the body, but without success. Lacks’s cells were sent to a lab at Hopkins, where they were cultured. Then, for reasons still not entirely understood, the cells began to grow and reproduce at a rapid rate, becoming the first “immortal” human cells grown in culture. The cells, known simply as HeLa cells, came to be used in research all over the world. “Within a very short period of time, they became one of the most important things to happen to medicine,” Skloot said.
Still alive and growing today, the HeLa cells contributed to the development of the polio vaccine. Their genes were the first ever mapped and they were the first cells to be cloned. Since Lacks’s death, her cells have been bought and sold by the billions, yet Lacks remained virtually unknown—until Skloot discovered her story.
Skloot was a high school student taking a community college biology class when she first heard about Henrietta Lacks. Skloot’s teacher had referred matter-of-factly to “amazing cells” that had been alive since the ’50s, writing out Lacks’s full name in big letters on the blackboard. When Skloot asked for more information about Lacks, the teacher said he didn’t have more, but suggested she do some research “to get some extra credit.”
She found nothing. But something had happened in that classroom, she said, and she never stopped wondering about Henrietta Lacks.
In college, as Skloot was preparing single-mindedly to become a veterinarian, she somewhat reluctantly took a creative writing class. For her first assignment, she wrote a paper about research on animals that angered her fellow students enough to start a letter-writing campaign to protest how the animals were being treated. The experience, she said, showed her the power of the written word.
For Skloot’s second writing assignment, she wrote an essay “about the fact that the whole world had forgotten about [Lacks] and I weirdly couldn’t.” In fact, Skloot admitted, she was obsessed with Lacks.
Skloot’s professor suggested that she consider becoming a science writer. Then he gave her some advice she often repeats today when she speaks to students: “Letting go of a goal doesn’t mean you’re giving up, as long as you have a new one to put in its place. That’s not failure, that’s just changing direction, which could be one of the best things you ever did in your life.”
“At that point, I did a U-turn and went very quickly into graduate school for writing,” Skloot said.
During her lecture, Skloot described the pile of rejection letters from book publishers about what would become The Immortal Life of Henrietta Lacks, and said the book finally was published, after 11 years of research and writing, because of “my hard-headedness” and the persistence of one of Lacks’s daughters.
Determined to document the story, Skloot had sought to interview members of Lacks’s family. At first she was rebuffed, but Lacks’s daughter Deborah eventually agreed—she had come to trust Skloot, but also wanted to know more about her mother, who died when Deborah was an infant.
Scientists also wanted the story to be told, Skloot said. She recounted how a neurosurgeon, near death himself, contacted her out of the blue and gave her a piece of paper documenting “the full catalog of the first company to ever sell HeLa cells.”
“That one piece of paper opened up the entire story of the biotech history behind HeLa, because then I could trace where that money came from, who it went to,” she said.
Skloot said she has been gratified by the book’s impact. After its publication, she established the Henrietta Lacks Foundation, which provides educational and emergency medical grants to Lacks’s descendants. A bitter irony has been that the Lacks family remains poor and struggling—many members without health insurance—while biotech companies have benefited handsomely from the commercialization of Lacks’ cells.
Skloot also believes that the book is broadening the discussion about race as more people learn about how medical science has treated minority groups. Telling the story of Henrietta Lacks, she said, is her “responsibility to history.”