Cover image for The immortal life of Henrietta Lacks
Title:
The immortal life of Henrietta Lacks
ISBN:
9781400052189
Edition:
1st pbk. ed.
Publication Information:
New York : Broadway Paperbacks, c2011.
Physical Description:
xiv, 381 p. : ill. (some col.) ; 25 cm.
Contents:
A few words about this book -- Prologue: the woman in the photograph -- Deborah's voice -- Part One: Life -- The exam 1951 -- Clover 1920-1942 -- Diagnosis and treatment 1951 -- The birth of HeLa 1951 -- "Blackness be spreadin all inside 1951 -- "Lady's on the phone" 1999 -- The death and life of cell culture 1951 -- "A miserable specimen 1951 -- Turner Station 1999 -- The other side of the tracks 1999 -- "The devil of pain itself" 1951 -- Part Two: Death -- The storm 1951 -- The HeLa factory 1951-1953 -- Helen Lane 1953-1954 -- "Too young to remember" 1951-1965 -- "Spending eternity in the same place" 1999 -- Illegal, immoral, and deplorable 1954-1966 -- "Strangest hybrid" 1960-1966 -- "The most critical time on this earth is now" 1966-1973 -- The HeLa bomb 1966 -- Night doctors 2000 -- "The fame she so richly deserves" 1970-1973 -- Immortality. "It's alive" 1973-1974 -- "Least they can do" 1975 -- "Who told you you could sell my spleen?" 1976-1988 -- Breach of privacy 1980-1985 -- The secret of immortality 1984-1995 -- After London 1996-1999 -- A village of Henriettas 2000 -- Zakariyya 2000 -- Hela, goddess of death 2000-2001 -- "All that's my mother" 2001 -- The hospital for the Negro insane 2001 -- The medical records 2001 -- Soul cleansing 2001 -- Heavenly bodies 2001 -- "Nothing to be scared about" 2001 -- The long road to Clover 2009 -- Where they are now -- About the Henrietta Lacks Foundation -- Afterword.
Reading Level:
1140 L Lexile
Summary:
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer, 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. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer and viruses; helped lead to in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks is buried in an unmarked grave. Her family did not learn of her "immortality" until more than twenty years after her death, when scientists began using her husband and children in research without informed consent. The story of the Lacks family 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--From publisher description.
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Summary

Summary

Now an HBO® Film starring Oprah Winfrey and Rose Byrne

#1 NEW YORK TIMES BESTSELLER

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells--taken without her knowledge in 1951--became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, and more. Henrietta's cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can't afford health insurance. This phenomenal New York Times bestseller tells a riveting story of the collision between ethics, race, and medici≠ of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew.


Author Notes

REBECCA SKLOOT nbsp;is an award-winning science writer whose work has appeared innbsp; The New York Times Magazine; O, The Oprah Magazine; Discover; nbsp;and many others. She is coeditor ofnbsp; The Best American Science Writing 2011nbsp; and has worked as a correspondent for NPR'snbsp; Radiolabnbsp; and PBS's Novanbsp; ScienceNOW . She was namednbsp;one of five surprising leaders of 2010 by the nbsp;Washington Post . Skloot's debut book,nbsp; The Immortal Life of Henrietta Lacks, took more than a decade tonbsp;research and write, and instantly became anbsp; New York Timesnbsp; bestseller. It was chosen as a best book of 2010 by more than sixty media outlets, includingnbsp; Entertainment Weekly , nbsp;People , and the New York Times .nbsp;Itnbsp;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.nbsp;Skloot is the founder and president of The Henrietta Lacks Foundation. She has a B.S. in biological sciences and annbsp;MFAnbsp;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.nbsp;For more information, visit her website at RebeccaSkloot.com, where you'll find links to follow her on Twitter and Facebook.nbsp;


Reviews 6

Library Journal Review

Starred Review. Accessible science at its best, the audio version gives the story of Henrietta's daughter, Deborah, all the gravity and pathos it deserves. Narrated by Cassandra Campbell and Bahni Turpin, who also worked together on The Help. (c) Copyright 2014. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Publisher's Weekly Review

Science journalist Skloot makes a remarkable debut with this multilayered story about "faith, science, journalism, and grace." It is also a tale of medical wonders and medical arrogance, racism, poverty and the bond that grows, sometimes painfully, between two very different women-Skloot and Deborah Lacks-sharing an obsession to learn about Deborah's mother, Henrietta, and her magical, immortal cells. Henrietta Lacks was a 31-year-old black mother of five in Baltimore when she died of cervical cancer in 1951. Without her knowledge, doctors treating her at Johns Hopkins took tissue samples from her cervix for research. They spawned the first viable, indeed miraculously productive, cell line-known as HeLa. These cells have aided in medical discoveries from the polio vaccine to AIDS treatments. What Skloot so poignantly portrays is the devastating impact Henrietta's death and the eventual importance of her cells had on her husband and children. Skloot's portraits of Deborah, her father and brothers are so vibrant and immediate they recall Adrian Nicole LeBlanc's Random Family. Writing in plain, clear prose, Skloot avoids melodrama and makes no judgments. Letting people and events speak for themselves, Skloot tells a rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society's most vulnerable people. (Feb.) (c) Copyright PWxyz, LLC. All rights reserved


Booklist Review

*Starred Review* The first immortal human cells, code-named HeLa, have flourished by the trillions in labs all around the world for more than five decades, making possible the polio vaccine, chemotherapy, and many more crucial discoveries. But where did the HeLa cells come from? Science journalist Skloot spent 10 years arduously researching the complex, tragic, and profoundly revealing story of Henrietta Lacks, a 31-year-old African American mother of five who came to Johns Hopkins with cervical cancer in 1951, and from whom tumor samples were taken without her knowledge or that of her family. Henrietta died a cruel death and was all but forgotten, while her miraculous cells live on, growing with mythological intensity. Skloot travels to tiny Clover, Virginia; learns that Henrietta's family tree embraces black and white branches; becomes close to Henrietta's daughter, Deborah; and discovers that although the HeLa cells have improved countless lives, they have also engendered a legacy of pain, a litany of injustices, and a constellation of mysteries. 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.--Seaman, Donna Copyright 2009 Booklist


New York Review of Books Review

A mother, lost to her family years ago, unwittingly left a legacy that changed science. FROM the very beginning there was something uncanny about the cancer cells on Henrietta Lacks's cervix. Even before killing Lacks herself 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 boisterously in a lab at Johns Hopkins - the first human cells ever to do so. HeLa became an instant biological celebrity, traveling to research labs all over the world. Meanwhile Lacks, a vivacious 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" ward. After Henrietta Lacks's death, HeLa went viral, so to speak, becoming the godmother of virology and then biotech, benefiting practically anyone who's 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 didn't know what she was getting into when she began researching the book as a graduate student in 1999. The first time she called Lacks's widower, then living in Baltimore, the person who answered the phone simply heard her voice and yelled, "Get Pop, lady's on the phone about his wife cells." Over the years it took Skloot to gain the family's trust, she came to understand that the only time white people ever called the house was when they wanted something to do with the HeLa cells. Some of the family feel they've been ripped off, cheated by either Johns Hopkins (though the hospital never sold the cells) or the entire medical establishment, which has made enormous profits from the cells. 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. The scene in this book that made my hair stand on end 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." Research on Henrietta Lacks's cancer cells has benefited anyone who has ever taken a pill stronger than aspirin. Lisa Margonelli is a senior research fellow at the New America Foundation and the author of "Oil on the Brain: Petroleum's Long, Strange Trip to Your Tank."


Guardian Review

In old-fashioned museums you can see the unconscious benefactors of mankind, trapped in glass cases: the freaks and monsters of their day, the anomalies, sometimes skeletonised and entire, sometimes cut into parts and labelled. When we look at them, fascination and repulsion uneasily mixed, we bow our heads to their contribution to knowledge, but it is hard to locate their humanity. The thread of empathy has frayed and snapped. They have become objects, more stone than flesh: petrified, post-human. Henrietta Lacks is a medical specimen of quite another kind. No dead woman has done more for the living, and yet we can imagine her easily from her photograph, a vivacious woman who was only 31 years old when she died in 1951 in a "coloured ward" in Johns Hopkins Hospital in Baltimore. Beloved by her family, a lively, open-hearted woman, Henrietta died in intractable pain, and at the autopsy her body's interior was pearled by tumours. Towards the end she had been given only palliative treatment, but no one had explained this to her family, who still hoped she might be cured. She left behind a husband and five children, the youngest only a baby. But she also left behind a slice of tissue, a piece excised from the cervical cancer that was her primary tumour. From this sample her cells were cultured. Previously, researchers had found it frustratingly difficult to keep alive fragile human cell lines, but these cells were robust and multiplied at an astonishing rate. In the years following Henrietta's death, the cell line, by laboratory convention known as HeLa, became an unparalleled research tool. Cells were sent to laboratories all over the world, bought and sold by research teams. They could be frozen, and their development paused and restarted. Because of them, thousands of experiments on live animals were not needed. Trillions of them are still alive, more than ever grew in Henrietta's living body. They have been employed in research into the polio vaccine, and into the effects of atomic warfare; they were shot into space, used in Aids research. But the woman who generated them, frequently misnamed, remained largely unknown, and her family benefited not at all from the unwitting donation of her money-spinning tissues. Who was Henrietta Lacks? She was born in Virginia in 1920. Her mother died in giving birth to the last of ten children, and the family were split up, Henrietta going to her grandfather. The family lived in a log cabin, former slave quarters, and tended the tobacco fields as their slave ancestors had done. Henrietta married her cousin and had her first child at 14. She and her husband moved to Baltimore in the hope of greater prosperity, but although she seems to have been a woman of pride and spirit, life dealt her a bad hand. She already had syphilis when her cancer was diagnosed. Her deaf daughter, Elsie, was institutionalised, and the recovery of the circumstances of the child's short life form a grim part of this narrative. Henrietta's other children were brought up in a cold, abusive atmosphere, knowing little of their mother as a person, and nothing of her part in medical history. When they were told, more than 20 years after her death, that her cells were still alive, they developed not just a sense that they were owed money but also a series of torturing misapprehensions. A cousin explained to the author: "Nobody round here ever understood how she dead and that thing still living. That's where the mystery's at." Joe, Henrietta's youngest son, was born when she was already ill; he served a long prison sentence for homicide and his lifelong delinquencies were attributed by the family to the poisoned environment of his mother's womb. Deborah, Henrietta's daughter, believed that her mother had been cloned, and that she was suffering the pains of all the diseases that her cells had helped to cure. It is not surprising they harboured such fears. Black oral history for years featured "night doctors" who abducted children for gruesome experiments, and the folk-beliefs were not entirely irrational. In public hospitals, experiments on black patients - experiments sometimes dangerous and unethical - were considered quid pro quo for free treatment. In the shameful Tuskegee project, carried out over forty years, black men were allowed to die from syphilis so that the progress of the disease could be studied. The dark, inhuman face of unpoliced science shows itself throughout this story, side by side with the bright face of discovery and humanitarian advance. The ironies are no less bitter because they are plain: today, Henrietta's descendents cannot afford health insurance. Henrietta was buried in an unmarked grave, in a cemetery with her black ancestors, and with white ancestors who, when the author inquired, would not acknowledge her. Rebecca Skloot revivifies Henrietta, studying her not only as the originator of her cell line but as a woman embedded in history. Her absorbing book is not just about medicine and science but about colour, race, class, superstition and enlightenment, about the painful, transfixing romance of being American. Her tenacious detective work into family history, her crisp and lively summation of the science, are virtues that compensate - just about - for a folksy, intrusive, condescending tone. Skloot is a teacher of "creative non-fiction", and here the "creative" part consists in zigzagging the chronology and appending picturesque details to humanise the hard data. But is the effort needed? If, when Henrietta's cells were first brought into the lab, the technician was eating a tuna salad sandwich, do we really need our brains burdened by that information? It would have been better to trust the story and tell it in as straightforward a way as possible. Skloot's final discussion of the ethics of the use of human tissue is followed by nine pages of acknowledgments that are more than usually fatuous and self-regarding, and the author's determination to write herself into the story distracts the reader from the dense factual background. But The Immortal Life of Henrietta Lacks succeeds despite itself: it is a fascinating, harrowing and necessary book, marred only slightly by the fact that the author wishes to be considered a heroine for writing it. Hilary Mantel's Wolf Hall is published by Fourth Estate. To order The Immortal Life of Henrietta Lacks for pounds 18.99 with free UK p&p call Guardian book service on 0330 333 6846 or go to guardian.co.uk/bookshop Caption: Captions: A piece of the past . . . Henrietta Lacks with her husband Who was Henrietta Lacks? She was born in Virginia in 1920. Her mother died in giving birth to the last of ten children, and the family were split up, [Henrietta] going to her grandfather. The family lived in a log cabin, former slave quarters, and tended the tobacco fields as their slave ancestors had done. Henrietta married her cousin and had her first child at 14. She and her husband moved to Baltimore in the hope of greater prosperity, but although she seems to have been a woman of pride and spirit, life dealt her a bad hand. She already had syphilis when her cancer was diagnosed. Her deaf daughter, Elsie, was institutionalised, and the recovery of the circumstances of the child's short life form a grim part of this narrative. Henrietta's other children were brought up in a cold, abusive atmosphere, knowing little of their mother as a person, and nothing of her part in medical history. When they were told, more than 20 years after her death, that her cells were still alive, they developed not just a sense that they were owed money but also a series of torturing misapprehensions. A cousin explained to the author: "Nobody round here ever understood how she dead and that thing still living. That's where the mystery's at." Joe, Henrietta's youngest son, was born when she was already ill; he served a long prison sentence for homicide and his lifelong delinquencies were attributed by the family to the poisoned environment of his mother's womb. Deborah, Henrietta's daughter, believed that her mother had been cloned, and that she was suffering the pains of all the diseases that her cells had helped to cure. - Hilary Mantel.


Kirkus Review

A dense, absorbing investigation into the medical community's exploitation of a dying woman and her family's struggle to salvage truth and dignity decades later. In a well-paced, vibrant narrative, Popular Science contributor and Culture Dish blogger Skloot (Creative Writing/Univ. of Memphis) demonstrates that for every human cell put under a microscope, a complex life story is inexorably attached, to which doctors, researchers and laboratories have often been woefully insensitive and unaccountable. In 1951, Henrietta Lacks, an African-American mother of five, was diagnosed with what proved to be a fatal form of cervical cancer. At Johns Hopkins, the doctors harvested cells from her cervix without her permission and distributed them to labs around the globe, where they were multiplied and used for a diverse array of treatments. Known as HeLa cells, they became one of the world's most ubiquitous sources for medical research of everything from hormones, steroids and vitamins to gene mapping, in vitro fertilization, even the polio vaccineall without the knowledge, must less consent, of the Lacks family. Skloot spent a decade interviewing every relative of Lacks she could find, excavating difficult memories and long-simmering outrage that had lay dormant since their loved one's sorrowful demise. Equal parts intimate biography and brutal clinical reportage, Skloot's graceful narrative adeptly navigates the wrenching Lack family recollections and the sobering, overarching realities of poverty and precivil-rights racism. The author's style is matched by a methodical scientific rigor and manifest expertise in the field. Skloot's meticulous, riveting account strikes a humanistic balance between sociological history, venerable portraiture and Petri dish politics. Copyright Kirkus Reviews, used with permission.


Excerpts

Excerpts

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 from high school and worked my way through college toward a biology degree, HeLa cells were omnipresent. I heard about them in histology, neurology, pathology; I used them in experiments on how neighboring cells communicate. But after Mr. Defler, no one mentioned Henrietta.             When I got my first computer in the mid-nineties and started using the Internet, I searched for information about her, but found only confused snippets: most sites said her name was Helen Lane; some said she died in the thirties; others said the forties, fifties, or even sixties. Some said ovarian cancer killed her, others said breast or cervical cancer.             Eventually I tracked down a few magazine articles about her from the seventies. Ebony quoted Henrietta's husband saying, "All I remember is that she had this disease, and right after she died they called me in the office wanting to get my permission to take a sample of some kind. I decided not to let them." Jet said the family was angry--angry that Henrietta's cells were being sold for twenty-five dollars a vial, and angry that articles had been published about the cells without their knowledge. It said, "Pounding in the back of their heads was a gnawing feeling that science and the press had taken advantage of them."             The articles all ran photos of Henrietta's family: her oldest son sitting at his dining room table in Baltimore, looking at a genetics textbook. Her middle son in military uniform, smiling and holding a baby. But one picture stood out more than any other: in it, Henrietta's daughter, Deborah Lacks, is surrounded by family, everyone smiling, arms around each other, eyes bright and excited. Except Deborah. She stands in the foreground looking alone, almost as if someone pasted her into the photo after the fact. She's twenty-six years old and beautiful, with short brown hair and catlike eyes. But those eyes glare at the camera, hard and serious. The caption said the family had found out just a few months earlier that Henrietta's cells were still alive, yet at that point she'd been dead for twenty-five years.             All of the stories mentioned that scientists had begun doing research on Henrietta's children, but the Lackses didn't seem to know what that research was for. They said they were being tested to see if they had the cancer that killed Henrietta, but according to the reporters, scientists were studying the Lacks family to learn more about Henrietta's cells. The stories quoted her son Lawrence, who wanted to know if the immortality of his mother's cells meant that he might live forever too. But one member of the family remained voiceless: Henrietta's daughter, Deborah.             As I worked my way through graduate school studying writing, I became fixated on the idea of someday telling Henrietta's story. At one point I even called directory assistance in Baltimore looking for Henrietta's husband, David Lacks, but he wasn't listed. I had the idea that I'd write a book that was a biography of both the cells and the woman they came from--someone's daughter, wife, and mother.             I couldn't have imagined it then, but that phone call would mark the beginning of a decadelong adventure through scientific laboratories, hospitals, and mental institutions, with a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist. While trying to make sense of the history of cell culture and the complicated ethical debate surrounding the use of human tissues in research, I'd be accused of conspiracy and slammed into a wall both physically and metaphorically, and I'd eventually find myself on the receiving end of something that looked a lot like an exorcism. I did eventually meet Deborah, who would turn out to be one of the strongest and most resilient women I'd ever known. We'd form a deep personal bond, and slowly, without realizing it, I'd become a character in her story, and she in mine.             Deborah and I came from very different cultures: I grew up white and agnostic in the Pacific Northwest, my roots half New York Jew and half Midwestern Protestant; Deborah was a deeply religious black Christian from the South. I tended to leave the room when religion came up in conversation because it made me uncomfortable; Deborah's family tended toward preaching, faith healings, and sometimes voodoo. She grew up in a black neighborhood that was one of the poorest and most dangerous in the country; I grew up in a safe, quiet middle-class neighborhood in a predominantly white city and went to high school with a total of two black students. I was a science journalist who referred to all things supernatural as "woo-woo stuff"; Deborah believed Henrietta's spirit lived on in her cells, controlling the life of anyone who crossed its paths. Including me.             "How else do you explain why your science teacher knew her real name when everyone else called her Helen Lane?" Deborah would say. "She was trying to get your attention." This thinking would apply to everything in my life: when I married while writing this book, it was because Henrietta wanted someone to take care of me while I worked. When I divorced, it was because she'd decided he was getting in the way of the book. When an editor who insisted I take the Lacks family out of the book was injured in a mysterious accident, Deborah said that's what happens when you piss Henrietta off.             The Lackses challenged everything I thought I knew about faith, science, journalism, and race. Ultimately, this book is the result. It's not only the story of HeLa cells and Henrietta Lacks, but of Henrietta's family--particularly Deborah--and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible. Excerpted from The Immortal Life of Henrietta Lacks by Rebecca Skloot All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.


Table of Contents

A Few Words About This Bookp. xiii
Prologue: The Woman in the Photographp. 1
Deborah's Voicep. 9
Part 1 Life
1 The Exam ... 1951p. 13
2 Clover ... 1920-1942p. 18
3 Diagnosis and Treatment ... 1951p. 27
4 The Birth of HeLa ... 1951p. 34
5 ôBlackness Be Spreadin All Insideö ... 1951p. 42
6 ôLady's on the Phoneö ... 1999p. 49
7 The Death and Life of Cell Culture ... 1951p. 56
8 ôA Miserable Specimenö ... 1951p. 63
9 Turner Station ... 1999p. 67
10 The Other Side of the Tracks ... 1999p. 77
11 ôThe Devil of Pain Itselfö ... 1951p. 83
Part 2 Death
12 The Storm ... 1951p. 89
13 The HeLa Factory ... 1951-1953p. 93
14 Helen Lane ... 1953-1954p. 105
15 ôToo Young to Rememberö ... 1951-1965p. 110
16 ôSpending Eternity in the Same Placeö ... 1999p. 118
17 Illegal, Immoral, and Deplorable ... 1954-1966p. 127
18 ôStrangest Hybridö ... 1960-1966p. 137
19 ôThe Most Critical Time on This Earth Is Nowö ... 1966-1973p. 144
20 The HeLa Bomb ... 1966p. 152
21 Night Doctors ... 2000p. 158
22 ôThe Fame She So Richly Deservesö ... 1970-1973p. 170
Part 3 Immortality
23 ôIt's Aliveö ... 1973-1974p. 179
24 ôLeast They Can Doö ... 1975p. 191
25 ôWho Told You You Could Sell My Spleen?ö ... 1976-1988p. 199
26 Breach of Privacy ... 1980-1985p. 207
27 The Secret of Immortality ... 1984-1995p. 212
28 After London ... 1996-1999p. 218
29 A Village of Henriettas ... 2000p. 232
30 Zakariyya ... 2000p. 241
31 Hela, Goddess of Death ... 2000-2001p. 250
32 ôAll That's My Motherö ... 2001p. 259
33 The Hospital for the Negro Insane ... 2001p. 268
34 The Medical Records ... 2001p. 279
35 Soul Cleansing ... 2001p. 286
36 Heavenly Bodies ... 2001p. 294
37 ôNothing to Be Scared Aboutö ... 2001p. 297
38 The Long Road to Clover ... 2009p. 305
Where They Are Nowp. 311
About the Henrietta Lacks Foundationp. 314
Afterwordp. 315
Cast of Charactersp. 329
Timelinep. 333
Acknowledgmentsp. 337
Notesp. 346
Indexp. 367
Reading Group Guidep. 379