The Immortal Life of Henrietta Lacks [Hardcover]

"One of the most graceful and moving nonfiction books I’ve read in a very long time…'The Immortal Life of Henrietta Lacks'…floods over you like a narrative dam break, as if someone had managed to distill and purify the more addictive qualities of 'Erin Brockovich,' 'Midnight in the Garden of Good and Evil' and 'The Andromeda Strain.'…it feels like the book Ms. Skloot was born to write. It signals the arrival of a raw but quite real talent.”—Dwight Garner, The New York Times

"Skloot's vivid account begins with the life of Henrietta Lacks, who comes fully alive on the page…'Immortal Life' reads like a novel."--Eric Roston, The Washington Post

“Gripping…by turns heartbreaking, funny and unsettling…raises troubling questions about the way Mrs. Lacks and her family were treated by researchers and about whether patients should control or have financial claims on tissue removed from their bodies.”—Denise Grady, New York Times

“The Immortal Life of Henrietta Lacks’’ is a fascinating read and a ringing success. It is a well-written, carefully-researched, complex saga of medical research, bioethics, and race in America. Above all it is a human story of redemption for a family, torn by loss, and for a writer with a vision that would not let go.”—Douglas Whynott, The Boston Globe

"Riveting...raises important questions about medical ethics...It's an amazing story...Deeply chilling... Whether those uncountable HeLa cells are a miracle or a violation, Skloot tells their fascinating story at last with skill, insight and compassion" —Colette Bancroft, St. Petersburg Times

“The history of HeLa is a rare and powerful combination of race, class, gender, medicine, bioethics, and intellectual property; far more rare is the writer than can so clearly fuse those disparate threads into a personal story so rich and compelling. Rebecca Skloot has crafted a unique piece of science journalism that is impossible to put down—or to forget.”—Seed magazine


“No one can say exactly where Henrietta Lacks is buried: during the many years Rebecca Skloot spent working on this book, even Lacks’s hometown of Clover, Virginia, disappeared. But that did not stop Skloot in her quest to exhume, and resurrect, the story of her heroine and her family. What this important, invigorating book lays bare is how easily science can do wrong, especially to the poor. The issues evoked here are giant: who owns our bodies, the use and misuse of medical authority, the unhealed wounds of slavery ... and Skloot, with clarity and compassion, helps us take the long view. This is exactly the sort of story that books were made to tell—thorough, detailed, quietly passionate, and full of revelation.”—TED CONOVER, author of Newjack and The Routes of Man

“It’s extremely rare when a reporter’s passion finds its match in a story. Rarer still when the people in that story courageously join that reporter in the search for what we most need to know about ourselves. When this occurs with a moral journalist who is also a true writer, a human being with a heart capable of holding all of life’s damage and joy, the stars have aligned. This is an extraordinary gift of a book, beautiful and devastating—a work of outstanding literary reportage. Read it! It’s the best you will find in many many years.”—ADRIAN NICOLE LEBLANC, author of Random Family
  
 ”The Immortal Life of Henrietta Lacks brings to mind the work of Philip K. Dick and Edgar Allan Poe. But this tale is true. Rebecca Skloot explores the racism and greed, the idealism and faith in science that helped to save thousands of lives but nearly destroyed a family. This is an extraordinary book, haunting and beautifully told.”—ERIC SCHLOSSER, author of Fast Food Nation 
 
“Skloot’s book is wonderful -- deeply felt, gracefully written, sharply reported. It is a story about science but, much more, about life.”—SUSAN ORLEAN, author of The Orchid Thief
  
“This is a science biography like the world has never seen. What if one of the great American women of modern science and medicine--whose contribution underlay historic discoveries in genetics, the treatment and prevention of disease, reproduction, and the unraveling of the human genome--was a self-effacing African-American tobacco farmer from the Deep South? A devoted mother of five who was escorted briskly to the Jim Crow section of Johns Hopkins for her cancer treatments? What if the untold millions of scientists, doctors, and patients enriched and healed by her gift never, to this day, knew her name? What if her contribution was made without her knowledge or permission? Ladies and gentlemen, meet Henrietta Lacks. Chances are, at the level of your DNA, your inoculations, your physical health and microscopic well-being, you’ve already been introduced.”--MELISSA FAY GREENE, author of Praying for Sheetrock and There Is No Me Without You
  
“Heartbreaking and powerful, unsettling yet compelling, The Immortal Life of Henrietta Lacks is a richly textured story of the hidden costs of scientific progress. Deftly weaving together history, journalism and biography, Rebecca Skloot?s sensitive account tells of the enduring, deeply personal sacrifice of this African American woman and her family and, at long last, restores a human face to the cell line that propelled 20th century biomedicine. A stunning illustration of how race, gender and disease intersect to produce a unique form of social vulnerability, this is a poignant, necessary and brilliant book.”—ALONDRA NELSON, Columbia University; editor of Technicolor: Race, Technology and Everyday Life
  
“Rebecca Skloot has written a marvelous book so original that it defies easy description. She traces the surreal journey that a tiny patch of cells belonging to Henrietta Lacks’s body took to the forefront of science. At the same time, she tells the story of Lacks and her family—wrestling the storms of the late twentieth century in America—with rich detail, wit, and humanity. The more we read, the more we realize that these are not two separate stories, but one tapestry. It’s part The Wire, part The Lives of the Cell, and all fascinating.”—CARL ZIMMER, author of Microcosm
  
“If virtues could be cultured like cells, Rebecca Skloot’s would be a fine place to start¾a rare combination of compassion, courage, wisdom, and intelligence. This book is extraordinary. As a writer and a human being, Skloot stands way, way out there ahead of the pack.”—MARY ROACH, author of Stiff and Bonk
  
“The Immortal Life of Henrietta Lacks takes the reader on a remarkable journey—compassionate, troubling, funny, smart—and irresistible. Along the way, Rebecca Skloot will change the way you see medical science and lead you to wonder who we should value more—the researcher or the research subject? Ethically fascinating and completely engaging—I couldn’t recommend it more.”—DEBORAH BLUM, author of The Poisoner’s Handbook and The Monkey Wars and the Helen Firstbrook Franklin professor of journalism at the University of Wisconsin-Madison
 
 “This remarkable story of how the cervical cells of the late Henrietta Lacks, a poor black woman, enabled subsequent discoveries from the polio vaccine to in vitro fertilization is extraordinary in itself; the added portrayal of Lacks's full life makes the story come alive with her humanity and the palpable relationship between race, science, and exploitation.—PAULA J. GIDDINGS, author of Ida, A Sword Among Lions; Elizabeth A. Woodson 1922 Professor, Afro-American Studies, Smith College
  
“Rebecca Skloot’s steadfast commitment to illuminating the life and contribution of Henrietta Lacks, one of the many vulnerable subjects used for scientific advancement, and the subsequent impact on her family is a testament to the power of solid investigative journalism. Her deeply compelling account of one family’s long and troubled relationship with America’s vast medical-industrial complex is sure to become a cherished classic.”—ALLEN M. HORNBLUM, author of Acres of Skin and Sentenced to Science
 
“Writing with a novelist’s artistry, a biologist’s expertise, and the zeal of an investigative reporter, Skloot tells a truly astonishing story of racism and poverty, science and conscience, spirituality and family driven by a galvanizing inquiry into the sanctity of the body and the very nature of the life force.”—BOOKLIST (starred review)
 
“Science journalist Skloot makes a remarkable debut with this multilayered story about ‘faith, science, journalism, and grace.’…Recalls Adrian Nicole LeBlanc’s Random Family…A rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society’s most vulnerable people.”—PUBLISHERS WEEKLY (starred review)
 
 
 

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia—a land of wooden slave quarters, faith healings, and voodoo—to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance? 
          
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

Rebecca Skloot is an award-winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many others. She is coeditor of The Best American Science Writing 2011 and has worked as a correspondent for NPR’s Radiolab and PBS’s Nova ScienceNOW. She was named one of five surprising leaders of 2010 by the Washington Post. Skloot's debut book, The Immortal Life of Henrietta Lacks, took more than a decade to research and write, and instantly became a New York Times bestseller. It was chosen as a best book of 2010 by more than sixty media outlets, including Entertainment Weekly, People, and the New York Times. It is being translated into more than twenty-five languages, adapted into a young reader edition, and being made into an HBO film produced by Oprah Winfrey and Alan Ball. Skloot is the founder and president of The Henrietta Lacks Foundation. She has a B.S. in biological sciences and an MFA in creative nonfiction. She has taught creative writing and science journalism at the University of Memphis, the University of Pittsburgh, and New York University. She lives in Chicago. For more information, visit her website at RebeccaSkloot.com, where you’ll find links to follow her on Twitter and Facebook. 

PROLOGUE
The Woman in the Photograph

There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her—a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is “Henrietta Lacks, Helen Lane or Helen Larson.”
           
No one knows who took that picture, but it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human cells—her cells, cut from her cervix just months before she died.
           
Her real name is Henrietta Lacks.

I’ve spent years staring at that photo, wondering what kind of life she led, what happened to her children, and what she’d think about cells from her cervix living on forever—bought, sold, packaged, and shipped by the trillions to laboratories around the world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.
            
There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.
          
I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen and sitting in a community college biology class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector. He pointed to two diagrams that appeared on the wall behind him. They were schematics of the cell reproduction cycle, but to me they just looked like a neon-colored mess of arrows, squares, and circles with words I didn’t understand, like “MPF Triggering a Chain Reaction of Protein Activations.”
            
I was a kid who’d failed freshman year at the regular public high school because she never showed up. I’d transferred to an alternative school that offered dream studies instead of biology, so I was taking Defler’s class for high-school credit, which meant that I was sitting in a college lecture hall at sixteen with words like mitosis and kinase inhibitors flying around. I was completely lost.
           
“Do we have to memorize everything on those diagrams?” one student yelled.
           
Yes, Defler said, we had to memorize the diagrams, and yes, they’d be on the test, but that didn’t matter right then. What he wanted us to understand was that cells are amazing things: There are about one hundred trillion of them in our bodies, each so small that several thousand could fit on the period at the end of this sentence. They make up all our tissues—muscle, bone, blood—which in turn make up our organs.
           
Under the microscope, a cell looks a lot like a fried egg: It has a white (the cytoplasm) that’s full of water and proteins to keep it fed, and a yolk (the nucleus) that holds all the genetic information that makes you you. The cytoplasm buzzes like a New York City street. It’s crammed full of molecules and vessels endlessly shuttling enzymes and sugars from one part of the cell to another, pumping water, nutrients, and oxygen in and out of the cell. All the while, little cytoplasmic factories work 24/7, cranking out sugars, fats, proteins, and energy to keep the whole thing running and feed the nucleus. The nucleus is the brains of the operation; inside every nucleus within each cell in your body, there’s an identical copy of your entire genome. That genome tells cells when to grow and divide and makes sure they do their jobs, whether that’s controlling your heartbeat or helping your brain understand the words on this page.
            
Defler paced the front of the classroom telling us how mitosis—the process of cell division—makes it possible for embryos to grow into babies, and for our bodies to create new cells for healing wounds or replenishing blood we’ve lost. It was beautiful, he said, like a perfectly choreographed dance.
           
All it takes is one small mistake anywhere in the division process for cells to start growing out of control, he told us. Just one enzyme misfiring, just one wrong protein activation, and you could have cancer. Mitosis goes haywire, which is how it spreads.
           
“We learned that by studying cancer cells in culture,” Defler said. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS.
          
Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before she died, a surgeon took samples of her tumor and put them in a petri dish. Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.
            
“Henrietta’s cells have now been living outside her body far longer than they ever lived inside it,” Defler said. If we went to almost any cell culture lab in the world and opened its freezers, he told us, we’d probably find millions—if not billions—of Henrietta’s cells in small vials on ice.
            
Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease; and they’ve been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers. Their chromosomes and proteins have been studied with such detail and precision that scientists know their every quirk. Like guinea pigs and mice, Henrietta’s cells have become the standard laboratory workhorse.
            
“HeLa cells were one of the most important things that happened to medicine in the last hundred years,” Defler said.
            
Then, matter-of-factly, almost as an afterthought, he said, “She was a black woman.” He erased her name in one fast swipe and blew the chalk from his hands. Class was over.
           
As the other students filed out of the room, I sat thinking, That’s it? That’s all we get? There has to be more to the story.
           
I followed Defler to his office.
            
“Where was she from?” I asked. “Did she know how important her cells were? Did she have any children?”
            
“I wish I could tell you,” he said, “but no one knows anything about her.”
           
After class, I ran home and threw myself onto my bed with my biology textbook. I looked up “cell culture” in the index, and there she was, a small parenthetical:
In culture, cancer cells can go on dividing indefinitely, if they have a continual supply of nutrients, and thus are said to be “immortal.” A striking example is a cell line that has been reproducing in culture since 1951. (Cells of this line are called HeLa cells because their original source was a tumor removed from a woman named Henrietta Lacks.)

That was it. I looked up HeLa in my parents’ encyclopedia, then my dictionary: No Henrietta.
           
As I graduated...