What happens to the blood you leave at the doctor's office? The little plastic cups full of urine? That mole you had removed that one time?
All those samples get tested, of course. But what then? The trash? Not always, writes Rebecca Skloot, in her new book, The Immortal Life of Henrietta Lacks. Sometimes, they end up in storage. In fact, according to Skloot, every one of us probably has some biological material on file somewhere. The samples are kept for research, on the off chance that a part of you might someday be interesting to science. You'll likely never know for sure, though, because nobody is under any obligation to tell you about it.
The Immortal Life of Henrietta Lacks is a book about the imbalance between the needs of medical science and the individual impacts of medical ethics (or the lack thereof). At its heart is the story of a woman—whose fatal cancer led to some of the major scientific breakthroughs of the 20th century—and the family who suffered through her death, then found out 30 years later about her afterlife in a petri dish.
Henrietta Lacks was a black woman, born on land left to her ancestors by the former slave owners who'd fathered them. She married, moved to Baltimore, had five children. When she was 31, Henrietta died, the victim of a frighteningly fast-moving cervical cancer. That was 1951.
But not all of Henrietta had been laid to rest. Cancer cells, taken before and after her death by doctors at Johns Hopkins, had become the first human cells to grow and thrive in the lab, living and multiplying indefinitely in test tubes around the world. Known as the HeLa cell line, little parts of Henrietta Lacks helped develop the polio vaccine, chemotherapy, in vitro fertilization and more.
It might be a story of human triumph, except that nobody got Henrietta's permission to use those cells for research. No one told her family about the samples. In fact, the Lacks' only learned about Henrietta's immortal life in 1973, from a chance conversation with a friend who worked at the National Cancer Institute.
"Henrietta Lacks is your mother-in-law?" he asked, suddenly excited. "Did she die of cervical cancer?"
Bobette stopped smiling and snapped, "How'd you know that?"
"Those cells in my lab have to be hers," he said. "They're from a black woman named Henrietta Lacks who died of cervical cancer at Hopkins in the fifties."
"What?!" Bobbette yelled, jumping up from her chair. "What you mean you got her cells in your lab?"
He held his hands up, like Whoa, wait a minute. "I ordered them from a supplier just like everybody else."
"What do you mean, 'everybody else'?!" Bobbette snapped. "What supplier? Who's got cells from my mother-in-law?"
That clash permeates the whole of Skloot's book. Time and time again we meet excited, grateful, clueless scientists who are thrilled and inspired by the research HeLa cells made possible, and don't understand why the same history makes the Lacks family furious. Over the years, scientists and researchers flitted in and out of the Lacks' life, taking blood samples, congratulating them on being related to such important cells, but never explaining what had happened to Henrietta the person, what implications her death had for her children's health, or what, beyond buzzwords and jargon, was currently happening to Henrietta's cells. And, despite the profits made off direct HeLa sales and indirect HeLa research, nobody has ever offered the Lacks' a cut. The children of the woman behind some of the greatest advances in medical science can't afford health care.
Skloot's book tells the story of HeLa as the story of Henrietta and the Lacks family, especially Henrietta's daughter Deborah, who was only a toddler when Henrietta died. For Deborah, understanding HeLa was about finding a connection to the mother she never knew. It's a unique perspective on scientific history. In fact, the story of HeLa cells has been told before, but by writers who mostly ignored the Lacks family—focusing instead on the brave and bold scientists—or just talked about their victimization. By letting the Lacks' be people, and by putting them in the center of the history, Skloot turns just another tale about the march of progress into a complicated portrait of the interaction between science and human lives.
Ultimately, The Immortal Life of Henrietta Lacks forces us to ask what we're willing to sacrifice for the greater good. Are lifesaving medical breakthroughs worth it if we can only get them—as researchers have successfully argued in court—by studying tissues taken from patients who aren't told how their cells are being used and aren't included in the patents or profits made on those cells? There's no easy answer. But facing the story of the Lacks family puts us in a much better position to move beyond either/or false dichotomies and start creating a new laws that make medicine more fair.
You can show your appreciation for the ways HeLa cells have improved public health by donating to the Henrietta Lacks Foundation. Founded by author Rebecca Skloot, the Foundation is raising money for scholarships for Henrietta Lacks' descendants, and to help cover the cost of health care for her family. The Foundation gives "those who have benefited from HeLa cells—including scientists, universities, corporations, and the general public—a way to show thanks to Henrietta and her family."
Disclosure: This review was based on a press copy of the book, which I received for free from Crown Publishing.
Maggie Koerth-Baker is the science editor at BoingBoing.net. She writes a monthly column for The New York Times Magazine and is the author of Before the Lights Go Out, a book about electricity, infrastructure, and the future of energy. You can find Maggie on Twitter and Facebook.