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Rebecca Skloot

The Immortal Life of Henrietta Lacks Paperback – March 8, 2011

by Rebecca Skloot (Author)

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#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly

NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION

NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail

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, which 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, 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.

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. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? 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.

Print length

381 pages
Language

English
Publisher

Crown
Publication date

March 8, 2011
Dimensions

5.14 x 1.11 x 7.94 inches
ISBN-10

9781400052189
Lexile measure

1140L
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Popular Highlights in this book

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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.
Highlighted by 7,176 Kindle readers
Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal.
Highlighted by 5,947 Kindle readers
Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.
Highlighted by 5,177 Kindle readers

Editorial Reviews

Review

"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, The 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)

About the Author

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.

Excerpt. © Reprinted by permission. All rights reserved.

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.

Product details

ASIN ‏ : ‎ 1400052181
Publisher ‏ : ‎ Crown (March 8, 2011)
Language ‏ : ‎ English
Paperback ‏ : ‎ 381 pages
ISBN-10 ‏ : ‎ 9781400052189
Lexile measure ‏ : ‎ 1140L
Item Weight ‏ : ‎ 13.6 ounces
Dimensions ‏ : ‎ 5.14 x 1.11 x 7.94 inches

Best Sellers Rank: #847 in Books (See Top 100 in Books)
- #1 in Medical Research (Books)
- #2 in Medical Professional Biographies
- #3 in History of Medicine (Books)

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Rebecca Skloot

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Rebecca Skloot is an award-winning science writer whose articles have appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and others. She has worked as a correspondent for NPR’s Radiolab and PBS’s NOVA scienceNOW, and is a contributing editor at Popular Science magazine and guest editor of The Best American Science Writing 2011. She is a former Vice President of the National Book Critics Circle and has taught creative nonfiction and science journalism at the University of Memphis, the University of Pittsburgh, and New York University. Her debut book, The Immortal Life of Henrietta Lacks, took more than ten years to research and write, and became an instant New York Times bestseller. She has been featured on numerous television shows, including CBS Sunday Morning and The Colbert Report. Her book has received widespread critical acclaim, with reviews appearing in The New Yorker, Washington Post, Science, Entertainment Weekly, People, and many others. It won the Chicago Tribune Heartland Prize and the Wellcome Trust Book Prize, and was named The Best Book of 2010 by Amazon.com, and a Best Book of the Year by Entertainment Weekly; O, The Oprah Magazine; The New York Times; Washington Post; US News & World Report; and numerous others.

The Immortal Life of Henrietta Lacks is being translated into more than twenty languages, and adapted into a young adult book, and an HBO film produced by Oprah Winfrey and Alan Ball. Skloot lives in Chicago but regularly abandons city life to write in the hills of West Virginia, where she tends to find stray animals and bring them home. She travels extensively to speak about her book. For more information, visit RebeccaSkloot.com, where you will find book special features, including photos and videos, as well as her book tour schedule, and links to follow her and The Immortal Life on Twitter and Facebook.

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ghost of a red rose

50% Biography + 50% Science = 100% Fascinating

Reviewed in the United States 🇺🇸 on September 19, 2010

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This book is 50% biography and 50% science; and it adds up to 100% fascinating. Wow - I couldn't put it down!

I have worked with HeLa cells many times during my career in microbiology, and I've always wondered about the woman from whom they originated. I was always very much aware that behind every one of the medical tests I performed lay a real person whose life might depend on the accuracy and insight of my work. I wanted to know as much as possible about that person, both to keep my focus on the real reason for the work I was doing, and to gain insight that might contribute to the patient's diagnosis and treatment.

And although I knew that "HeLa" had died in 1951, I felt the same way about working with the cells from her malignant cervical tumor. I wanted to know more about her, to always be aware of and empathetic to the real person and her suffering. But I graduated before Rebecca Skloots did, at a time when even less was known about "HeLa." I didn't know Henrietta Lacks' name, that she was African-American, her age when she died, or how long she was ill; and I had never seen the photo of her that is now so famous. I wondered whether she had any children, and what became of them when she died.

So I was thrilled when this book came out, and it has been on my "priority tbr" list since I first heard of it. It lived up to, and even exceeded, my expectations. It answered all my questions, and brought up many new ones, the answers to some of which may never be known.

Henrietta's life was a hard one. She lost her own mother at the age of four and was raised by her grandparents. Life for her was an endless struggle against poverty. But one thing she did have was a large and close-knit extended family. Even without a mother, she learned well the arts of caring and nurturing; and all of her adult life she fed and took in other family members who needed help. She married a cousin with whom she'd grown up, and they had five children. There doesn't seem to be so much as a hint of a rumor that she ever had any other lover in all her life. But life was unfair to Henrietta. Her husband was a notorious philanderer, with the result that she was constantly plagued by sexually transmitted diseases. One of them - HPV - gave her cervical cancer and was also the reason for her cells' immortality. (Normal cells live for only about 50 divisions, then die. But the HeLa cells cultured from Henrietta's tumor are still living and reproducing sixty years later, and that is what makes them so valuable to science.) Henrietta had three venereal diseases at the same time during her cancer treatments. Her cancer was incredibly aggressive, and she died after months of terrible agony. One can only hope that her spirit survives somewhere to know that the tragedy of her life was given meaning by her contribution to medical science - arguably the most important in the history of medicine.

The story of Henrietta's older daughter Elsie is even more heartbreaking. She was born deaf, mute, epileptic, and perhaps retarded due to congenital syphilis (meaning she contracted it in her mother's womb. All 5 of the Lacks children suffered neural hearing disabilities from the same cause.) At least one family member believes that Elsie may not have been retarded at all, but was simply unable to communicate due to her deafness. No matter what her IQ might have been, her story is utterly horrifying. A photo of Elsie from when she still lived at home shows her to be a strikingly beautiful child; and also clean, healthy, and happy. But when Henrietta became so ill, she could no longer care for her daughter and Elsie was institutionalized. What happened to the 11-year-old girl in the Crownsville State Hospital for the Negro Insane is so shocking and awful that it's almost unbelievable. This part of the book is very difficult to read, but it's important that people know - both to honor Elsie's memory, and to make sure that such things do not happen again.

Henrietta died before her younger daughter Deborah was old enough to remember her, and Deborah was to spend the rest of her life longing for information about her mother and sister, trying to forge some kind of connection with her lost ones. Deborah's help and commitment to finding the truth was vital in the writing of this book.

Sloot comes across as sincere and as having developed a genuine and lasting bond with Henrietta's family, rather than as simply a dispassionate and objective reporter. This was instrumental to her research, as the family had been "burned" several times by unscrupulous characters who only wanted to cash in on the story for their own profit. It made the Lacks family defensive and ultra cautious. Before Skloot could even begin writing the book, she first had to win their trust. And she does seem to have honored that, by setting up a scholarship trust fund for the education of Henrietta's descendants and donating a portion of the book's profits to it. Another, indirect, result of this book is the donation of tombstones for Henrietta's and her daughter Elsie's previously unmarked graves.

The information given in the book about the ways in which Henrietta's cells have contributed to science and helped other people is fascinating and amazing! Without HeLa, the polio vaccine and the most effective cancer medications wouldn't exist; nor could the HIV virus have been identified. And these are just the beginning: the list goes on and on.

The book concludes with a thorough discussion of the ethics of medical research on human tissues. Henrietta's sons have a strong sense of injustice that their mother's cells were taken without her knowledge or permission, and that so many people have made vast amounts of money off of them while her children cannot afford basic medical care. And who can blame them? They do have a point. Patient privacy is another problem that arises when working with human cells, especially now that their DNA can be fingerprinted. Skloot interviews many experts with widely varying opinions about these issues, and shows us how extremely complex the matter is, with no easy answers.

The book includes some great photos. And if you go to the author's website, you can see many more photos, including some of the ones described but not included in the book. [...]

My one criticism of this book was that it left some questions unanswered that probably could have been answered. Especially - and this one's driving me crazy - what were the caged creatures that frightened Margaret Lacks so, when she got lost in the basement of Johns Hopkins Hospital - the "man-sized rabbits"? (I'm guessing kangaroos.) Also, why were Henrietta's children allowed to be born with damage from congenital syphilis? Why wasn't Henrietta treated for it? Her first two kids (including Elsie) were born at home, so she probably didn't have access to professional medical care at that time. But the others were born in hospitals. Was it that she didn't have any prenatal care, so that by the time she was in labor it was too late? Or that the effective penicillin treatment wasn't commonly available yet? Was it available but not given to indigent black patients?

I also noticed that Skloots uses the inaccurate term "hereditary syphilis" rather than the correct "congenital syphilis." But given the extensive amount of research she did (the book took 10 years to write) I suspect that was a deliberate choice rather than an error. Skloots may have felt that readers without a scientific background would better understand the word "hereditary". Actually "hereditary" refers to features that are inherited by way of genes; "congenital" simply means that a person is born with some condition, and it may or may not be hereditary. Syphilis is not a genetic disease, but one that comes from being infected by the microorganism. In congenital syphilis, the fetus is infected while in the womb and the disease has already caused permanent damage by the time the baby is born.

Further evidence of the massive research project undertaken by Ms. Skloots can be seen in the appendices. The "Acknowledgments" section is actually interesting to read, as it gives further information about members of the Lacks family and their story. And beware when reading the "Notes" section - as well as thousands of technical scientific articles, it describes hundreds of interesting-sounding books for further reading that might threaten to overwhelm your tbr list!

Oprah Winfrey and Alan Ball are working together on producing a movie based on The Immortal Life on Henrietta Lacks. Thanks to this book, Henrietta and her family are finally getting the recognition they deserve. On the inside back of the book jacket, there is a website address given where you can donate to the foundation for the education of Henrietta's descendants. I hope that everyone who reads the book will do that, even if they can only afford a small contribution. [...]

(358 pages)

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wanted to make an immortal cell line that didn’t die like the rest

Reviewed in the United States 🇺🇸 on April 30, 2016

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The book The Immortal Life of Henrietta Lacks by Rebecca Skloot is about the life, death, and family life of a woman named Henrietta. When she turned 30 she developed an aggressive form cervical cancer and received treatment at John Hopkins hospital. However as they were treating her the doctor took a slice of her tumor and put it into a tube for testing. They did this with a lot of people back then all without patient consent. The doctor, specifically Gey Gardener, wanted to make an immortal cell line that didn’t die like the rest. Usually a day or two after they took the sample, it died. However Henrietta’s cells lived and continued to grow in as much space and they gave it. Though thought of as a fluke at first, her cells continue to divide to this day and is used in almost every laboratory. Because of their widespread nature, it is amazing how not many people know about the woman behind the cells. This is why the author decided to write this book. While the topic alone is amazing, the author made it even better by making the book easy to understand, exploring the ethics of the doctor patient relationship, and incorporating Henrietta’s family.
The easy to understand language is what makes the book available to such a wide audience. Whenever a science term or event was refereed to instead of requiring the reader to have prior knowledge everything was explained. At times it seemed that things were explained in too much detail but this is so that anyone can read it and understand. In book of this sort, usually a lot of terms are thrown around but that is not the case in this one. There were some times that things could have been left out because they involved basic information but she also included it so that people like Henrietta’s descendants, who had little to no formal education, could read it. By no means was this a strictly scientific book, in fact one of its other strong points was the human element.
The author is in fact a character in this story. In order to write this story she had to get know the family of Henrietta which was not very easy. At one point she was calling Henrietta’s daughter every day just for the story. She got stood up in hotels, hung up on, and criticized but she stayed on the story. Because of that she got really close to Henrietta’s daughter Deborah. Her and Deborah formed a true bond and the author stayed with her even through panic attacks, health issues, bouts of extreme paranoia, and her eventual death. There was a very clear human element that pulled at heartstring that didn’t just stem from the author getting to know the family but from her researching and finding the small things. Some of these times include when Henrietta was dying. Instead of just saying that she died the author went in detail and included a really small but meaningful piece on page 81. “And everyone I talked to who might know said that Gey and Henrietta never met. Everyone, that is, except Laure Aurelian, a microbiologist who was Geys colleague at Hopkins. I’ll never forget it, Aurelian said. George told me he leaned over Henrietta’s bed and said, Your cells will make you immortal. He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone.” (81). That tiny moment said represented was so beautifully tragic and added a whole new level to the book.
Another part that was really special about the book was the moral and ethical dilemmas. Henrietta’s cells were taken without her knowledge or permission. “No one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix” (39). The author makes a point of acknowledging that back then patients and doctors had a very strained relationship. Doctors would often experiment on their patient without permission. But also doctors weren’t required to tell the patient everything that was going on with them. There was one instant that the author pointed out a case where a man, Moore, had cancer and his doctor Golde, treated him but removed his spleen. But then the doctor started asking for numerous follow up appointments and went as far as paying for his plane ticket from the other side of the country to come see him until Moore figured out something fishy was going on. Moore found out that Golde was engineering a cell line from his cells because they produced a hard to come by protein. When Moore tried to sue he lost because Golde patented it and there was a ruling that once cells leave a patient's body, they are no longer their own. The only difference between this case and Henrietta’s was that the man was educated enough to fight this and even when the ruling was not in his favor he could make sure the doctor couldn’t take any more of his cells. The author also showed another example of the ethics of the medical practice. There was a case where a man went in for what he thought was a standard procedure but when he woke up he was paralysed from the waist down. He had no idea the risks of the procedure which could have influenced his decision of whether to get it or pursue another method of treatment.
Overall the books way of being empathetic, easy to understand, and tackling the moral and ethical nuances of the medical practice is what made it so good. Through every page I felt immersed in the story and the breakup of the chapters were masterful. I really enjoyed how the book was divided into chapter that jumped back and from when Henrietta’s childhood and when she got her diagnosis to her death and the author trying to find out more about her. It reads like a research novel. While it wasn’t as plot driven as a novel it wasn’t as analytical and clinical as a textbook. It was also more human and less persuasive than a newspaper article. I liked the way the author organised it because it guaranteed that something was always happening which is why the author organized it that way. It made it really interesting and informative. It also brought out themes of lack of health care for colored people in the 50’s, the spiritual belief of the link between body and soul, and the poverty that still exists today. I expected this book to be very clinical focus only on how the cells were used but I was pleasantly surprised. By the end of the book, the author reached the conclusion that Henrietta should be known and that her family should be either cared for or compensated for the distribution of their mother’s cells. The book as a whole goes very logically from start to finish and comes together very sadly but oddly satisfyingly with the death of Deborah and shows that the whole Lacks family had hard lives.

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Top reviews from other countries

Avirosa

Amazing Story Let Down by White Saviour Narrative

Reviewed in the United Kingdom 🇬🇧 on April 1, 2020

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There are several stories which require the storyteller to insert themselves within the story to set the tone and context of their respective stories. The Immortal Life of Henrietta Lacks did not require that at all and yet for some reason a large portion of the book is devoted to showing how fair this white (and how often they remind us that she is white!) woman manages to surpass the absolute bottom of the barrel expectations the much-abused Lacks family has after decades upon decades of being taken advantage of by people who scarcely acknowledged their humanity. At on point the author relays an experience where she had to relay what she knew about how black people have historically been treated in medical situations and she seems to figuratively pat herself on the back for being able to name two situations. She explains how she didn't talk down to people in one breath and then in another breath explains how (in her eyes) uneducated x person is ("Do you know what a cell is?").

The book couldn't have been written without addressing race both in its history and in the underlying impact that segregation and underservice has had on communities. Henrietta Lacks had what happened to her happen because she was black, no doubt about that, but this book spends more time on explaining how the white woman gained the trust of Henrietta's remaining family than it does on the actual life of Henrietta Lacks!

The writing was nothing particularly special, the chronology of the book jumps around so much they've included a timeline to remind you where you are (though it does so to disguise a few minorly startling events). The book reads like a book report that an overzealous white ninth-grade horsegirl would have to write on Beloved by Toni Morrison: self-congratulatory and constantly reminding people that she's not like the poor black folk just because she's telling you about their story.

I recommend getting this one from the library. Read it for Henrietta's life, which comprises about two or three chapters only(!) and know that nothing gets resolved re: gene/tissue ownership (for anyone) by the end of the book.

29 people found this helpful

Maya26

I have greatly enjoyed reading the story of the Lacks family

Reviewed in the United Kingdom 🇬🇧 on April 2, 2017

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As a Life Sciences Graduate, I knew of the HeLa cells and of the woman behind the cells, but only by name. This book is very well researched, very well written and engaging. I have greatly enjoyed reading the story of the Lacks family, of Henrietta Lacks' life her background, her life, her personality, her children etc. This book, perfectly narrated, touches on multiple topics, from segregation to biology. I have learnt far more in the book around the story of cell culture than I did in my undergrad and I wish we had been recommended this book. It places scientific research, informed consent, and patient privacy in its historical context. The author has given life to the woman and her family besides her cells stored in the lab. A fascinating book. I highly recommend this book. I have followed the link directing to the foundation and am very please to read that donations have allowed so much for the lacks family. Finally, the author's passion, attention to details and strong desire to uncover the truth in addition to her genuine intentions and actions to help this family is admirable.

45 people found this helpful

Patricia Walker

An amazing read

Reviewed in the United Kingdom 🇬🇧 on September 2, 2021

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This is an amazing book to read but a cripplingly sad saga for the family and descendants of Henrietta Lacks. I shed more than a few tears as I read this account of how an amazing woman of colour bore her 'lot in life' as the saying all too often goes, only to die alone and in acute pain.

While this book is mainly about how the cancerous cells of Henrietta Lacks, or Helen Lane as she was first recorded against the 'HeLa' cells that were obtained from the first of the Many tumours that eventually caused her death, gave science some hugely amazing results that jumped mankind through hoops forwards in regard of treatments discovered for many diseases, not least of which is many types of cancer and the polio pandemic of the 1950's, it is also the story of Henrietta's family from birth to the present day - and the future.

I have no wish to detract from the text of this book any further other than to tell you, the prospective reader, that this book is worth the time you will take in reading it and, once you have done so, you will come to regard Henrietta and her family - particularly her daughters Elsie and Deborah with sadness first and then awe.

I cannot emphasise enough how profound a story this is nor how deeply it has affected me given how badly Henrietta and her family were treated. I would implore each and every person to get hold of a copy and read how far science has travelled for decades already and will do so for many more all because of Henrietta.

I own a softback and an e-copy of this book

3 people found this helpful

Michelle

5 stars

Reviewed in the United Kingdom 🇬🇧 on October 31, 2020

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Henrietta Lacks changed medical science yet most scientists don't know her name. The medication we take today is down to the progress medical science made through her immortal life, yet her own family can not afford doctors. I was upset and angry to read the authors note at the beginning, my fury and sadness only rose from there.

This is a non fiction about Henrietta Lacks, a black women who died of cancer of the cervix in a time where black people didn't question white people, it was the time of Jim Crow laws, segregation and black people were just happy to be getting treatment since discrimination in hospitals was widespread.

The history of smear tests and HPV are also covered here, it's very readable and the author has done a great job of making these science heavy subjects very digestible.

But this isn't a history of science, its the history of a woman, a woman we should all know the name of.

As a side note I am totally baffled that until recently we had to opt into a donor scheme to save a life with our organs yet we have no claim on our tissues and cells for medical research. Mind-blowing.

6 people found this helpful

J. Errington

One of those books everyone should read

Reviewed in the United Kingdom 🇬🇧 on September 15, 2017

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A fascinating read - thoroughly enjoyed the book. I work in scientific research and clinical trials and the entire 'story' was so interesting to me, I have even worked on HeLa cells - but had no idea of their background, and the way they were obtained and used in the early days without consent horrifies me.
I have also just watched the film (on a plane journey) and have to say I was very disappointed with it - it in no way does justice to the book - so if you have only watched the movie, don't let it put you off reading the book - the book is SO much better.

25 people found this helpful

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