The Immortal Life of Henrietta Lacks (Turtleback School & Library Binding Edition)

Overview

"Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells - taken without her knowledge - became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they'd weigh more than 50 million metric tons - as much as a hundred Empire State Buildings. HeLa cells were ...

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Overview

"Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells - taken without her knowledge - became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they'd weigh more than 50 million metric tons - as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb's effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions." Rebecca Skloot takes us on an extraordinary journey, from the "colored" ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells, from Henrietta's small, dying hometown of Clover, Virginia - a land of wooden slave quarters, faith healings, and voodoo - to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

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Editorial Reviews

From Barnes & Noble

Who, you might ask, is Henrietta Lacks (1920-1951) and why is she the subject of a book? On the surface, this short-lived African American Virginian seems an unlikely candidate for immortality. The most remarkable thing about her, some might argue, is that she had ten children during her thirty-one years on earth. Actually, we all owe Ms. Lacks a great debt and some of us owe her our lives. As Rebecca Skloot tells us in this riveting human story, Henrietta was the involuntary donor of cells from her cancerous tumors that have been cultured to create an immortal cell line for medical research. These so-called HeLa cells have not only generated billions of dollars for the medical industry; they have helped uncover secrets of cancers, viruses, fertilization, cloning, and gene mapping. A vivid, exciting story; a 2010 Discover Great New Books finalist; a surprise bestseller in hardcover. Now in paperback and NOOKbook.

Dwight Garner
…one of the most graceful and moving nonfiction books I've read in a very long time. A thorny and provocative book about cancer, racism, scientific ethics and crippling poverty, The Immortal Life of Henrietta Lacks also 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. More than 10 years in the making, it feels like the book Ms. Skloot was born to write. It signals the arrival of a raw but quite real talent…[The Immortal Life of Henrietta Lacks] has brains and pacing and nerve and heart, and it is uncommonly endearing.
—The New York Times
Eric Roston
Skloot's vivid account…reads like a novel. The prose is unadorned, crisp and transparent…This book, labeled "science--cultural studies," should be treated as a work of American history. It's a deftly crafted investigation of a social wrong committed by the medical establishment, as well as the scientific and medical miracles to which it led. Skloot's compassionate account can be the first step toward recognition, justice and healing.
—The Washington Post
Publishers Weekly
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.)
Booklist
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. Starred review.
Library Journal
This distinctive work skillfully puts a human face on the bioethical questions surrounding the HeLa cell line. Henrietta Lacks, an African American mother of five, was undergoing treatment for cancer at Johns Hopkins University in 1951 when tissue samples were removed without her knowledge or permission and used to create HeLa, the first "immortal" cell line. HeLa has been sold around the world and used in countless medical research applications, including the development of the polio vaccine. Science writer Skloot, who worked on this book for ten years, entwines Lacks's biography, the development of the HeLa cell line, and her own story of building a relationship with Lacks's children. Full of dialog and vivid detail, this reads like a novel, but the science behind the story is also deftly handled. VERDICT While there are other titles on this controversy (e.g., Michael Gold's A Conspiracy of Cells: One Woman's Immortal Legacy—and the Medical Scandal It Caused), this is the most compelling account for general readers, especially those interested in questions of medical research ethics. Highly recommended. [See Skloot's essay, p. 126; Prepub Alert, LJ 11/1/09.]—Carla Lee, Univ. of Virginia Lib., Charlottesville
Lisa Margonelli
…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.
—The New York Times Book Review
Kirkus Reviews
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 vaccine-all 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 pre-civil-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 betweensociological history, venerable portraiture and Petri dish politics. Tie-in with multicity author lecture schedule. Agent: Simon Lipskar/Writers House
The Barnes & Noble Review

Henrietta Lacks lives a shadowy life as a footnote in biology textbooks. I first encountered her when taking a college course in cell biology: the cells used in a particular experiment, we learned, were "HeLa cells," which, though human, can grow independently outside the body in specially created laboratory conditions. They were named for the woman, Helen Lane, from whom they were originally derived. And that was all; having explained this, my professor returned to discussing the experiment and its significance. Like a drowned corpse bobbing up from the dark depths of footnote-dom, Helen Lane had surfaced briefly, only to descend again into obscurity. I didn't give her a second thought.

In contrast, science writer Rebecca Skloot also had a Helen Lane footnote moment in high school, but saw in that footnote the nucleus of a story about science and society. After ten years of HeLa sleuthing, Skloot's hunch has paid off handsomely: The Immortal Life of Henrietta Lacks is a modern classic of science writing.

Let me qualify that. This isn't science writing in the sense of Stephen Jay Gould or Richard Dawkins: Skloot doesn't spend a lot of time describing or extolling scientific discoveries. For her, the science is a bit player -- though an important one -- in a complex and fascinating drama about how medical research intersected the lives of a poor black family in America. Her mixture of science and biography is sui generis, and its themes profound: racism, ethics, and scientific illiteracy.

The first thing Skloot learned was that "Helen Lane" was not the woman's real name, but a journalist's pseudonym for Henrietta Lacks. Born in1920 to a poor tobacco-farming family from southern Virginia, Lacks married and, following her husband's job, moved to Maryland. At age 31, she presented herself at Johns Hopkins Hospital, complaining of abdominal pain and vaginal bleeding. Doctors found an evil-looking purple growth on her cervix, which turned out to be malignant. She was given the latest treatment -- a packet of radium sewn inside her vagina -- but it didn't work. Eight months later Lacks died in agony, leaving five young children.

But for a quirk of fate, Lacks would be just another working person who lived and died in obscurity. A slice of her biopsy fell into the hands of George Gey, a researcher at Hopkins who, with the help of his wife Mary, had spent fruitless years trying to keep human cells alive in the laboratory. (This "tissue culture" is crucial for medical research since it obviates the need to experiment on living patients.) For some reason Helen's cells, which Gey dubbed "HeLa," not only lived, but divided rapaciously, becoming the first human cells that could be cultured indefinitely in the lab. We now know why: Lacks's cells have elevated amounts of an enzyme that keeps them from ageing.

Convinced that HeLa cells were the key to curing cancer, Gey handed them out gratis to dozens of researchers. And they became a scientific gold mine, used to develop the first polio vaccines, test chemotherapy drugs like Taxol, find treatments for AIDS, work out techniques for in vitro fertilization, and map genes onto human chromosomes. Even now, after nearly sixty years, 14 scientific papers on HeLa cells are published every day. Clearly, Henrietta Lacks achieved both physical and scientific immortality.

But her family was unaware of her distinction, and although biotechnology companies made millions of dollars peddling HeLa cells, her children never saw a dime. In fact, they didn't even know about the famous cells until years after Henrietta's death, finding out only when her daughter-in-law, who learned about them by accident, called the family with a chilling message: "Part of your mother, it's alive!" The commercial exploitation of Lacks's cells made her kin feel exploited and resentful. It took Skloot a year to get the family to return her phone calls, several more before they opened up completely. Eventually Skloot became friend and confidante to Henrietta's daughter Deborah, who was only an infant when her mother died. Deborah's search for the mother she never knew, and for the significance of her still-growing cells, is the pivot on which Skloot's story turns.

As Skloot led her through the maze of science, Deborah became deeply ambivalent. On one hand she was proud of her mother's contributions to medicine, on the other she became paranoid and erratic, worried that she would catch her mother's cancer or be pursued by the same doctors who, she believed, killed Henrietta. The tumultuous friendship between author and subject makes for some amazing vignettes: Deborah seeing her mother's cells for the first time under a microscope ("Oh God," she gasped. "I can't believe all that's my mother"); Deborah worrying that the experimental fusion of HeLa cells with plant cells would produce a "human monster that was half her mother, half tobacco"; Deborah being exorcised of the demon cells by her evangelical cousin Gary as Skloot looks on ("LORD, I KNOW you sent Miss Rebecca to help LIFT THE BURDEN of them CELLS!").

The family finally makes peace with HeLa, deciding that "God chose Henrietta as an angel who would be reborn as immortal cells." Despite this, Skloot's tale doesn't end happily. But I defy you to read it without being moved. Or without thinking, for beneath the book runs a subliminal conversation about medical ethics. Apart from the selfless George Gey, Skloot's scientists and doctors behaved less than honorably. Henrietta Lacks's cells were cultured, disseminated, and sold without her or the family's knowledge or consent. Doctors with more curiosity than morality injected the cells into unsuspecting patients to see if they could cause cancer. The aggressive growth of HeLa cells caused them to contaminate other human cell cultures throughout the world, but scientists refused to admit the problem lest they lose reputation and funding. And, to track down this contamination, scientists at Johns Hopkins requested blood samples from Deborah and her siblings, but misled them by saying they were being "tested for cancer." Skloot avoids moralizing, but the injustice done to the Lacks family is palpable. One of many reasons to buy this wonderful book is to redress that injury: part of the profits go to a scholarship fund for Henrietta Lacks's descendants.

Skloot's afterword describes the current state of medical ethics. Sadly, progress has been slow. Yes, patients' names and records are now private, and scientists can't experiment on living subjects without informed consent, but doctors can still remove, profit from, and even patent a patient's tissues and DNA without her permission. This has become increasingly worrisome in the modern age of genomics. Since anyone's DNA might harbor a gene that is medically or commercially useful, all of us are fertile ground for genetic prospecting. That's not inherently bad, but researchers should remember the first dictum of medical ethics: patients are fellow human beings, not just collections of genes and tissues. Skloot describes how that insight struck George Gey's assistant when she saw Henrietta Lacks, nails carefully tended, laid out on the autopsy table:

"When I saw those toenails," Mary told me years later, "I nearly fainted. I thought, Oh geez, 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."

--Jerry Coyne

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Product Details

  • ISBN-13: 9780606269544
  • Publisher: San Val, Incorporated
  • Publication date: 3/8/2011
  • Format: Library Binding
  • Edition description: THIS EDITION IS INTENDED FOR USE IN SCHOOLS AND LIBRARIES ONLY
  • Pages: 400
  • Product dimensions: 4.90 (w) x 7.90 (h) x 1.30 (d)

Meet the Author

Rebecca Skloot

REBECCA SKLOOT is an award-winning science writer whose articles have appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; Columbia Journalism Review; and elsewhere. She has worked as a correspondent for NPR's RadioLab and PBS's Nova ScienceNOW, and blogs about science, life, and writing at Culture Dish, hosted by Seed magazine. She also teaches creative nonfiction at the University of Memphis. Visit her website at rebeccaskloot.com.

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Read an Excerpt

The Immortal Life of Henrietta Lacks


By Rebecca Skloot

Crown

Copyright © 2010 Rebecca Skloot All right reserved.
ISBN: 9781400052172

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, whathappened 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.

Continues...


Excerpted from The Immortal Life of Henrietta Lacks by Rebecca Skloot Copyright © 2010 by Rebecca Skloot. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.


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Table of Contents

Prologue: The Woman in the Photograph 1

Deborah's Voice 9

Pt. 1 Life

1 The Exam ... 1951 13

2 Clover ... 1920-1942 18

3 Diagnosis and Treatment ... 1951 27

4 The Birth of HeLa ... 1951 34

5 "Blackness Be Spreadin All Inside" ... 1951 42

6 "Lady's on the Phone" ... 1999 49

7 The Death and Life of Cell Culture ... 1951 56

8 "A Miserable Specimen" ... 1951 63

9 Turner Station ... 1999 67

10 The Other Side of the Tracks ... 1999 77

11 "The Devil of Pain Itself" ... 1951 83

Pt. 2 Death

12 The Storm ... 1951 89

13 The HeLa Factory ... 1951-1953 93

14 Helen Lane ... 1953-1954 105

15 "Too Young to Remember" ... 1951-1965 110

16 "Spending Eternity in the Same Place" ... 1999 118

17 Illegal, Immoral, and Deplorable ... 1954-1966 127

18 "Strangest Hybrid" ... 1960-1966 137

19 "The Most Critical Time on This Earth Is Now" ... 1966-1973 144

20 The HeLa Bomb 1966 152

21 Night Doctors 2000 158

22 "The Fame She So Richly Deserves" ... 1970-1973 170

Pt. 3 Immortality

23 "It's Alive" ... 1973-1974 179

24 "Least They Can Do" ... 1975 191

25 "Who Told You You Could Sell My Spleen?" ... 1976-1988 199

26 Breach of Privacy ... 1980-1985 207

27 The Secret of Immortality ... 1984-1995 212

28 After London ... 1996-1999 218

29 A Village of Henriettas ... 2000 232

30 Zakariyya ... 2000 241

31 Hela, Goddess of Death ... 2000-2001 250

32 "All That's My Mother" ... 2001 259

33 The Hospital for the Negro Insane ... 2001 268

34 The Medical Records ... 2001 279

35 Soul Cleansing ... 2001 286

36 Heavenly Bodies ... 2001 294

37 "Nothing to Be Scared About" ... 2001 297

38 The Long Road to Clover ... 2009 305

Where They Are Now311

Afterword 315

Acknowledgments 329

Notes 338

Index 359

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Reading Group Guide

1. On page xiii, Rebecca Skloot states “This is a work of nonfiction. No names have been changed, no characters invented, no events fabricated.” Consider the process Skloot went through to verify dialogue, recreate scenes, and establish facts. Imagine trying to re-create scenes such as when Henrietta discovered her tumor (page 15). What does Skloot say on pages xiii–xiv and in the notes section (page 346) about how she did this?

2. One of Henrietta’s relatives said to Skloot, “If you pretty up how people spoke and change the things they said, that’s dishonest” (page xiii). Throughout, Skloot is true to the dialect in which people spoke to her: the Lackses speak in a heavy Southern accent, and Lengauer and Hsu speak as non-native English speakers. What impact did the decision to maintain speech authenticity have on the story?

3. As much as this book is about Henrietta Lacks, it is also about Deborah learning of the mother she barely knew, while also finding out the truth about her sister, Elsie. Imagine discovering similar information about one of your family members. How would you react? What questions would you ask?

4. In a review for the New York Times, Dwight Garner writes, “Ms. Skloot is a memorable character herself. She never intrudes on the narrative, but she takes us along with her on her reporting.” How would the story have been different if she had not been a part of it? What do you think would have happened to scenes like the faith healing on page 289? Are there other scenes you can think of where her presence made a difference? Why do you think she decided to include herself in the story?

5.  Deborah shares her mother’s medical records with Skloot, but is adamant that she not copy everything. On page 284 Deborah says, “Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible.” Discuss the deeper meaning behind this sentence. Think not only of her words, but also of the physical reaction she was having to delving into her mother’s and sister’s medical histories. If you were in Deborah’s situation, how would you react to someone wanting to look into your mother’s medical records?

6. This is a story with many layers. Though it’s not told chronologically, it is divided into three sections. Discuss the significance of the titles given to each part: Life, Death, and Immortality. How would the story have been different if it were told chronologically?

7. As a journalist, Skloot is careful to present the encounter between the Lacks family and the world of medicine without taking sides. Since readers bring their own experiences and opinions to the text, some may feel she took the scientists’ side, while others may feel she took the family’s side. What are your feelings about this? Does your opinion fall on one side or the other, or somewhere in the middle, and why?

8. Henrietta signed a consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (page 31). Based on this statement, do you believe TeLinde and Gey had the right to obtain a sample from her cervix to use in their research? What information would they have had to give her for Henrietta to give informed consent? Do you think Henrietta would have given explicit consent to have a tissue sample used in medical research if she had been given all the information? Do you always thoroughly read consent forms before signing them?

9. In 1976, when Mike Rogers’s Rolling Stone article was printed, many viewed it as a story about race (see page 197 for reference). How do you think public interpretation might have been different if the piece had been published at the time of Henrietta’s death in 1951? How is this different from the way her story is being interpreted today? How do you think Henrietta’s experiences with the medical system would have been different had she been a white woman? What about Elsie’s fate?

10. Consider Deborah’s comment on page 276: “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.” Is it possible to approach history from an objective point of view? If so, how and why is this important, especially in the context of Henrietta’s story?

11. Deborah says, “But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense” (page 9). Should the family be financially compensated for the HeLa cells? If so, who do you believe that money should come from? Do you feel the Lackses deserve health insurance even though they can’t afford it? How would you respond if you were in their situation?

12. Dr. McKusick directed Susan Hsu to contact Henrietta’s children for blood samples to further HeLa research; neither McKusick nor Hsu tried to get informed consent for this research. Discuss whether or not you feel this request was ethical. Further, think about John Moore and the patent that had been filed without his consent on his cells called “Mo” (page 201). How do you feel about the Supreme Court of California ruling that states when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes?

13. Religious faith and scientific understanding, while often at odds with each other, play important roles in the lives of the Lacks family. How does religious faith help frame the Lacks’ response to and interpretation of the scientific information they receive about HeLa? How does Skloot’s attitude towards religious faith and science evolve as a result of her relationship with the Lackses?

14. On page 261, Deborah and Zakariyya visit Lengauer’s lab and see the cells for the first time. How is their interaction with Lengauer different from the previous interactions the family had with representatives of Johns Hopkins? Why do you think it is so different? What does the way Deborah and Zakariyya interact with their mother’s cells tell you about their feelings for her?

15. Reflect upon Henrietta’s life: What challenges did she and her family face? What do you think their greatest strengths were? Consider the progression of Henrietta’s cancer in the last eight months between her diagnosis and death. How did she face death? What do you think that says about the type of person she was?

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