It’s no longer enough just to throw our stuff away; now we must worry about what someone else might do with it. So we buy shredders for our bank statements, pay to have old hard drives scrubbed free of personal information, and even take out identity-theft insurance to keep what was ours—yet what is still us—out of other people’s hands. I tear up junk mail, but 10 years ago, when my doctor threw away my tonsils, I didn’t think to have them cremated, pureed, or otherwise obliterated.
Discarded tonsils, an excised appendix, biopsied cells: these things contain information, and by extension, value. Odds are that someone, somewhere, makes a living collecting and redistributing such cast-offs for medical research or drug development. On the website for the U.S. Department of Health and Human Services, an obscure flow chart outlines the process by which “tissue collectors” pass their wares to repositories and data management centers that in turn divvy them up to “recipient investigators.” According to a RAND Corporation study, unearthed by journalist Rebecca Skloot, researchers have collected more than 307 million bits of flesh from more than 178 million people, and add 20 million more samples each year to the collection.
In The Immortal Life of Henrietta Lacks (Crown Publishing Group, 384 p., $26), Skloot explores the obscure world of tissue research and the ethical quandaries inherent in an industry built on the parts of actual people. Her story revolves around the life of Henrietta Lacks, who was born in 1920 in rural Virginia to former slaves, later moved to Baltimore, and died of cervical cancer in 1951. For several months before her death, Lacks was treated by doctors at Johns Hopkins Medical Center; along the way, and without her knowledge, part of her tumor was removed and sent to be analyzed in a ramshackle lab run by George Gey, head of tissue-culture research at the hospital. Lacks had signed a standard hospital consent form, but she could not have foreseen what would happen next, that her cells would change the course of medical science and, as Skloot documents, raise a host of questions about medical responsibility that continue to haunt the field today.
For decades, scientists had tried, unsuccessfully, to grow human cells (especially cancerous ones) in the lab, in order to study and perhaps cure diseases like cancer. But as George Gey shortly discovered, Henrietta Lack’s discarded cells were something of a modern miracle — they were the first ever cells to replicate indefinitely in the lab. Even as Lacks died a stone’s throw away, part of her lived on to become one of the 20th century’s most powerful tools for medical research: the HeLa cell, so-named based on the convention combining the first two letters of the patient’s first and last name. Gey gave vials of HeLa cells to any researcher who asked. They were mass-produced to test Jonas Salk’s polio vaccine, and helped make a cure possible. They were central to the discovery that the human papilloma virus, or HPV, causes cervical cancer, which in turn can be prevented by vaccination, and to the discovery of human chromosomes, which has led to the diagnosis of rare genetic diseases.
The list goes on, Skloot notes, as does the list of private companies that profited from the patient’s unwitting donation. And profit they did. HeLa cells quickly became commodities, factory-produced, airmailed worldwide, the basis for a global industry in the sale of human blood and tissue. One company, Invitrogen, sells specialized HeLa products that cost nearly $10,000 a vial. Skloot’s telling of this aspect of modern medicine reads like good fiction, rich with characters of mixed stripes: insensitive jerks, ignorant brainiacs; some blindly altruistic to the point of naïveté, others who fully understood that they were deceiving patients about the true value of their cast-off tissues.
Meanwhile, the family Henrietta Lacks sank deeper into poverty, mania, and despair, entirely forgotten by the medical community. Skloot spent the better part of a decade tracking down as many living members of the family as she could find, patiently calling, waiting, calling again, and waiting some more. Immortal Life interweaves their stories in a narrative that progresses in chronological order from the 1920s through today. But it is in Skloot’s rendering of the later decades that her writing is at its finest, her insights sharpest, and the emotional and ethical complexities of Lacks’s story most movingly rendered. From the story of a cell emerges the story of a person, a compelling human drama, that elucidates life’s most profound questions—how we got here and what happens when we’re gone.
As Skloot begins to earn the family’s trust, she is drawn in deeper. While on a road trip with Henrietta’s now middle-aged daughter, Deborah, to track down cousins in rural Virginia, Skloot finds herself reading the Bible—for the first time in her life—with Henrietta’s deeply religious descendents, who believe that Henrietta was brought back to do good in this world in the form of HeLa cells. Deborah, meanwhile, fears that her mother may be suffering physical or emotional trauma from been poked, prodded, and centrifuged in the name of scientific discovery. “When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola,” Skloot writes, “Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation.”
Without ever preaching, Skloot raises urgent questions about what “informed consent” really means. In 1951, doctors weren’t required to tell you when they used your cells for research nor to give you a share of any of the profits; they still aren’t today. Should they be? Or would that stricture seriously impede the free flow of scientific information and perhaps harm the public good? “How you should feel about this isn’t obvious,” Skloot notes in the book’s afterword. “It’s not as if scientists are stealing your arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that often involves taking some part of you.” As we hurtle toward the day when a visit to the doctor begins with a thorough DNA exam, the question of what exactly we’ll leave for the taking when we exit remains wide open.
Laura Wright is the senior editor of OnEarth magazine. She lives in New York City.