From the very start there was something eerie about the cancer cells on Henrietta Lacks’s cervix. Even before killing Lacks in 1951, they took on a life of their own. Removed during a biopsy and cultured without her permission, the HeLa cells (named from the first two letters of her first and last names) reproduced exuberantly in a lab at Johns Hopkins — the first human cells ever to do so. HeLa became an instant biological superstar, traveling to research labs all over the world. Meanwhile Lacks, a vibrant 31-year-old African-American who had once been a tobacco farmer, tended her five children and endured scarring radiation treatments in the hospital’s “colored” quarter.
After Henrietta Lacks’s death, HeLa went viral, so to speak, becoming the godmother of virology and then biotech, benefiting practically anyone of us who ever taken a pill stronger than aspirin. Scientists have grown some 50 million metric tons of her cells, and you can get some for yourself simply by calling an 800 number. HeLa has helped build thousands of careers, not to mention more than 60,000 scientific studies, with nearly 10 more being published every day, revealing the secrets of everything from aging and cancer to mosquito mating and the cellular effects of working in sewers.
HeLa is so outrageously robust that if one cell lands in a petri dish, it proceeds to take over. And so, like any good celebrity, HeLa had a scandal: In 1966 it became clear that HeLa had contaminated hundreds of cell lines, destroying research as far away as Russia. By 1973, when Lacks’s children were shocked to learn that their mother’s cells were still alive, HeLa had already been to outer space.
During the eight months that Lacks herself was dying of cancer, the HeLa cells so thoroughly eclipsed her that a lab assistant at her autopsy glanced at her painted red toes and thought: “Oh jeez, 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.”
In “The Immortal Life of Henrietta Lacks,” Rebecca Skloot introduces us to the “real live woman,” the children who survived her, and the interplay of race, poverty, science and one of the most important medical discoveries of the last 100 years. Skloot narrates the science lucidly, tracks the racial politics of medicine thoughtfully and tells the Lacks family’s often painful history with grace. She also confronts the spookiness of the cells themselves, intrepidly crossing into the spiritual plane on which the family has come to understand their mother’s continued presence in the world. Science writing is often just about “the facts.” Skloot’s book, her first, is far deeper, braver and more wonderful.
Skloot traces the family’s emotional ordeal, the changing ethics and law around tissue collections, and the inadvertently careless journalists and researchers who violated the family’s privacy by publishing everything from Henrietta’s medical records to the family’s genetic information. She tacks between the perspective of the scientists and the family evenly and fairly, arriving at a paradox described by Henrietta’s daughter Deborah. “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! . . . But I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
Deborah, a generous spirit, becomes the book’s driving force, as Skloot joins her in her “lifelong struggle to make peace with the existence of those cells, and the science that made them possible.” To find the mother she never got to know, she read hundreds of articles about HeLa research, which led her to believe that her mother was “eternally suffering” from all the experiments performed on her cells. In unsentimental prose, Skloot describes traveling with her to Clover, Va., where Henrietta grew up in her grandfather’s cabin, former slave quarters in a town where the black Lackses and the white Lackses don’t mix. Suffering from hives and extreme anxiety, Deborah seeks out a relative who channels the voice of God. He tells Deborah to let Skloot carry the “burden” of the cells from now on, explaining that the cells have become heavenly bodies, immortal angels.
But “The Immortal Life of Henrietta Lacks” is much more than a portrait of the Lacks family. It is also a critique of science that insists on ignoring the messy human provenance of its materials. “Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you dissociate your materials from the people they come from,” a researcher named Robert Stevenson tells Skloot in one of the many ethical discussions seeded throughout the book.
The ethical issues implicated in the HeLa story are many and tangled. Since 1951, science has progressed much faster than our ability to figure out what is right and wrong about tissue culture. In the 1980s a doctor who had removed the cancer-ridden spleen of a man named John Moore patented some of the cells to create a cell line then valued at more than $3 billion, without Moore’s knowledge. Moore sued, and on appeal the court ruled that patients had the right to control their tissues, but soon that was struck down by the California Supreme Court, which said that tissue removed from the body had been abandoned as medical waste. The cell line created by the doctor had been “transformed” via his “inventive effort,” and to say otherwise would “destroy the economic incentive to conduct important medical research.” The court said that doctors should disclose their financial interests and called on legislators to increase patient protections and regulation, but this has hardly hindered the growth of the field. In 1999 the RAND Corporation estimated that American labs alone held more than 307 million tissue samples from some 178 million people. Not only is the question of payment for profitable tissues unresolved, Skloot notes, but it’s still not necessary to obtain consent to store cells and tissue taken in diagnostic procedures and then use the samples for research.
In the most touching scene in this book occurred when the Lackses followed Skloot into the world of science, just as she had followed them into the world of faith. In 2001, an Austrian researcher at Johns Hopkins named Christoph Lengauer invited the family to his lab. When Deborah and her brother visited, he led them to the basement, where they “saw” their mother for the first time, warming frozen test tubes of HeLa in their hands and watching as a cell divided into two under a microscope while Lengauer explained his work. Deborah pressed a cold vial to her lips. “You’re famous,” she whispered. “Just nobody knows it.”