The Immortal Life of Henrietta Lacks

Henrietta Lacks lives a shadowy life as a footnote in biology textbooks. I first encountered her when taking a college course in cell biology: the cells used in a particular experiment, we learned, were “HeLa cells,” which, though human, can grow independently outside the body in specially created laboratory conditions. They were named for the woman, Helen Lane, from whom they were originally derived. And that was all; having explained this, my professor returned to discussing the experiment and its significance. Like a drowned corpse bobbing up from the dark depths of footnote-dom, Helen Lane had surfaced briefly, only to descend again into obscurity. I didn’t give her a second thought.

In contrast, science writer Rebecca Skloot also had a Helen Lane footnote moment in high school, but saw in that footnote the nucleus of a story about science and society. After ten years of HeLa sleuthing, Skloot’s hunch has paid off handsomely: The Immortal Life of Henrietta Lacks is a modern classic of science writing.

Let me qualify that. This isn’t science writing in the sense of Stephen Jay Gould or Richard Dawkins: Skloot doesn’t spend a lot of time describing or extolling scientific discoveries. For her, the science is a bit player — though an important one — in a complex and fascinating drama about how medical research intersected the lives of a poor black family in America. Her mixture of science and biography is sui generis, and its themes profound: racism, ethics, and scientific illiteracy.

The first thing Skloot learned was that “Helen Lane” was not the woman’s real name, but a journalist’s pseudonym for Henrietta Lacks. Born in 1920 to a poor tobacco-farming family from southern Virginia, Lacks married and, following her husband’s job, moved to Maryland. At age 31, she presented herself at Johns Hopkins Hospital, complaining of abdominal pain and vaginal bleeding. Doctors found an evil-looking purple growth on her cervix, which turned out to be malignant. She was given the latest treatment — a packet of radium sewn inside her vagina — but it didn’t work. Eight months later Lacks died in agony, leaving five young children.

But for a quirk of fate, Lacks would be just another working person who lived and died in obscurity. A slice of her biopsy fell into the hands of George Gey, a researcher at Hopkins who, with the help of his wife Mary, had spent fruitless years trying to keep human cells alive in the laboratory. (This “tissue culture” is crucial for medical research since it obviates the need to experiment on living patients.) For some reason Helen’s cells, which Gey dubbed “HeLa,” not only lived, but divided rapaciously, becoming the first human cells that could be cultured indefinitely in the lab. We now know why: Lacks’s cells have elevated amounts of an enzyme that keeps them from ageing.

Convinced that HeLa cells were the key to curing cancer, Gey handed them out gratis to dozens of researchers. And they became a scientific gold mine, used to develop the first polio vaccines, test chemotherapy drugs like Taxol, find treatments for AIDS, work out techniques for in vitro fertilization, and map genes onto human chromosomes. Even now, after nearly sixty years, 14 scientific papers on HeLa cells are published every day. Clearly, Henrietta Lacks achieved both physical and scientific immortality.

But her family was unaware of her distinction, and although biotechnology companies made millions of dollars peddling HeLa cells, her children never saw a dime. In fact, they didn’t even know about the famous cells until years after Henrietta’s death, finding out only when her daughter-in-law, who learned about them by accident, called the family with a chilling message: “Part of your mother, it’s alive!”  The commercial exploitation of Lacks’s cells made her kin feel exploited and resentful. It took Skloot a year to get the family to return her phone calls, several more before they opened up completely. Eventually Skloot became friend and confidante to Henrietta’s daughter Deborah, who was only an infant when her mother died. Deborah’s search for the mother she never knew, and for the significance of her still-growing cells, is the pivot on which Skloot’s story turns.

As Skloot led her through the maze of science, Deborah became deeply ambivalent. On one hand she was proud of her mother’s contributions to medicine, on the other she became paranoid and erratic, worried that she would catch her mother’s cancer or be pursued by the same doctors who, she believed, killed Henrietta. The tumultuous friendship between author and subject makes for some amazing vignettes: Deborah seeing her mother’s cells for the first time under a microscope (“Oh God,” she gasped. “I can’t believe all that’s my mother”); Deborah worrying that the experimental fusion of HeLa cells with plant cells would produce a “human monster that was half her mother, half tobacco”; Deborah being exorcised of the demon cells by her evangelical cousin Gary as Skloot looks on (“LORD, I KNOW you sent Miss Rebecca to help LIFT THE BURDEN of them CELLS!”).

The family finally makes peace with HeLa, deciding that “God chose Henrietta as an angel who would be reborn as immortal cells.” Despite this, Skloot’s tale doesn’t end happily. But I defy you to read it without being moved. Or without thinking, for beneath the book runs a subliminal conversation about medical ethics. Apart from the selfless George Gey, Skloot’s scientists and doctors behaved less than honorably. Henrietta Lacks’s cells were cultured, disseminated, and sold without her or the family’s knowledge or consent. Doctors with more curiosity than morality injected the cells into unsuspecting patients to see if they could cause cancer. The aggressive growth of HeLa cells caused them to contaminate other human cell cultures throughout the world, but scientists refused to admit the problem lest they lose reputation and funding. And, to track down this contamination, scientists at Johns Hopkins requested blood samples from Deborah and her siblings, but misled them by saying they were being “tested for cancer.” Skloot avoids moralizing, but the injustice done to the Lacks family is palpable. One of many reasons to buy this wonderful book is to redress that injury: part of the profits go to a scholarship fund for Henrietta Lacks’s descendants.

Skloot’s afterword describes the current state of medical ethics. Sadly, progress has been slow. Yes, patients’ names and records are now private, and scientists can’t experiment on living subjects without informed consent, but doctors can still remove, profit from, and even patent a patient’s tissues and DNA without her permission. This has become increasingly worrisome in the modern age of genomics. Since anyone’s DNA might harbor a gene that is medically or commercially useful, all of us are fertile ground for genetic prospecting. That’s not inherently bad, but researchers should remember the first dictum of medical ethics: patients are fellow human beings, not just collections of genes and tissues. Skloot describes how that insight struck George Gey’s assistant when she saw Henrietta Lacks, nails carefully tended, laid out on the autopsy table:

“When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh geez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”