Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.
Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia—a land of wooden slave quarters, faith healings, and voodoo—to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.
Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
|Publisher:||Penguin Random House Audio Publishing Group|
|Product dimensions:||4.88(w) x 6.00(h) x 1.17(d)|
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.
Read an Excerpt
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.
Table of Contents
A Few Words About This Book xiii
Prologue: The Woman in the Photograph 1
Deborah's Voice 9
Part 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
Part 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
Part 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 Now 311
About the Henrietta Lacks Foundation 314
Cast of Characters 329
Reading Group Guide 379
What People are Saying About This
"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)
"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)
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?
Most Helpful Customer Reviews
When I started reading this story, I did not know what to expect. I am a biologist and, though I do not work extensively on human studies (I study mostly bacteria) I have heard and read 100s of scientific studies that were based on work on "HeLa" cells. These cells are literally everywhere in research facilities. But other than on rare occasions, there is rarely much discussion of the person behind these cells (or in fact, behind any cells used in research). I started the book with a bit of trepidation because it would have been easy for the author, Rebecca Skloot to sensationalize the history of the person behind these cells. But I was wonderfully surprised once I started reading the book (and in fact, could not put it down). First, the book is incredibly well written and crafted - weaving together three (or more) threads: the life of Henrietta Lacks, the obsession of the author with the story of HeLa, and the science behind human cell line research. Second, and perhaps more important to me, the book is incredibly well balanced in telling the story. For example, it would have been easy for Skloot to vilify the scientists at Johns Hopkins who isolated the cell line and then continued to work on it as well as related topics. (I note, I know some of these people as I used to have an Adjunct Appointment at Johns Hopkins). But in fact, Skloot is meticulously careful about researching the facts behind the story and in trying to explain what happened in the context of the times (e.g., she does a good job of describing how concepts of "informed consent" have changed over time). Instead of simply portraying scientists as evil or blaming them for "stealing" HeLa cells, Skloot portrays scientists as they really are - frequently well intentioned but a bit naive at times about the repercussions of what they are doing. (I note, Skloot does not try to sugarcoat scientists or any others in the book either - when scientists clearly erred this is described. But what I really like about the portrayal is that the portrayals of the Lacks family, of scientists, and of others, is done without any excessive judging. She lets the readers come to their own decisions about whether what people did was good or bad or in between. In this way, the book is nuanced and is really a history of science book. Finally, I think it is worth pointing out that this book is incredibly timely. As technology has advanced it is now becoming possible to determine the entire genetic makeup of individual people - and soon this will be possible at such a low cost that many people will have this done. In addition, medical research is accelerating at a dizzying pace - with many large scale studies being done involving samples from 100s-1000s of people. These studies have the potential to revolutionize medicine. But it is going to be very important for the scientists involved and for society in general to continue to think about the issues associated with "sharing" information and samples. The HeLa book is an important addition to this discussion and is written in such a way that just about anyone can read and understand it.
I read this book as a scientist whose PhD thesis work 20 years ago almost entirely made use of HeLa cells. HeLa cells were central to my first paper from my independent laboratory and fueled my first major research grant from the American Cancer Society. I say this because I thought I was a HeLa expert. Rebecca Skloot has taught me that I knew only a small fraction of the story that brought to me a gift that launched my scientific career. This book is remarkable in that it is a painstakingly-documented and fact-checked account of science, ethics, and history, yet reads smoothly and engagingly as well to my colleagues with no background in science. Most importantly, Skloot brings to us the uncomfortable history of medical injustices to the African-American community that extends back to slave ships and today fuels the relative reticence of blacks to participate in clinical trials. The story is so touching and moved my heart to experience the torment shared by the Lacks family to the triumph and education of the Lacks family about the very real contributions of their matriarch's gift to science and humanity. A native of New Jersey who has spent a third of his life in the American South, I am still often called a Yankee here. Skloot's book shares with the rest of the country and the world the culture and experience of life in the Jim Crow South and the place religion holds for a people who were sustained by their faith from slavery through struggles that continue today. My white privilege is real. As for the cells themselves, yes, yes, Ms. Lacks did not give up her tumor tissue because she intended for the cells to be propagated and studied worldwide - her tissue was taken to the lab unknowingly and without consent as was done then with hundreds of patients at Johns Hopkins. But one has to read the Skloot book to also appreciate that researchers came back to the Lacks family 20 years later for tissue samples without compassion or an appreciation for the communication required to adequately inform the family about their motivations. Skloot teaches us that the cultivation of the first immortalized human cell line opened the door to understanding how this could be done for more intractable cells in culture. She stimulated me to go back and read some of the 1950s papers by pioneers like Ted Puck, Richard Ham, and Harry Eagle on the requirements for mammalian cell growth in vitro that form the basis of techniques used in cancer and viral research laboratories worldwide. Many of these papers using HeLa cells appeared in the most prominent journals of then and today: Science, Nature, and the Journal of Experimental Medicine. But step back for a moment as humans who stand on the shoulders of our forebearers: how can you look back on the breadth of discoveries enabled by the availability of HeLa cells and not feel some debt of gratitude toward this woman? How can one not feel compelled to honor her suffering and that of her family? For me, that is reason enough for this story to be told with the finesse and reverence Skloot so gently shares herein, aided by the respect that she earned from the Lacks family. For those posting based upon perceptions or news accounts, I strongly encourage you to read the entire text even if you think you know the whole story. I assure you: you do not. We are indebted to Rebecca for her tenacious work over the last ten years to fulfill a curiosity in a woman she discovered 20 years ago in high school.
This is an amazing, fascinating true story about a poor black woman, Henrietta Lacks in the 1950s who became ill with cervical cancer. Her cells were taken from her body during treatment and harvested for medical research. They took two samples of the cells from her uterus. These Hela cells mass produced and have become immortal.Years of disinterest or misinformation kept the truth from Henrietta's family and the world. This book is a document in history and the extent the Lacks' have gone through to get the truth told about their mother. This book was obviously well researched, not just in the history but the personal aspect was engaging and interesting. Henrietta Lacks is a miracle. She helped find numerous vaccines and enabled the research and discovery of some of medical treatment after she was long gone. Rebecca Skloot takes readers through the life of Henrietta Lacks, well beyond her years on this earth. We learn of her children, their children, and so on and also the history of scientific progress. Skloot weaves the human interest story of the Lackses with the historical progress of research, DNA, chromosomes and cells. This story is fascinating, inspiring and heartbreaking. I highly recommend! A treasure!
I received a copy of Rebecca Skloot's new book The Immortal Life of Henrietta Lacks before Christmas. I read it while my family and I traveled to Phoenix and have thought about it almost every day since. his is, without a doubt, the single best piece of non-fiction I have ever read. It is one of the most important stories of the last 100 years and should be required reading for every scientist and physician-in-training. In short, I loved it and consider myself among Rebecca Skloot's biggest fans. When I first wrote about this book on my blog, I received comments from people who were upset that Rebecca Skloot might be suggesting that we stop using HeLa cells. They were concerned that Rebecca Skloot's book is simply another story of African American injustice. Neither of these as individual themes do the book justice. The most important message of the book is the reminder that, as scientists, we have the responsibility to be aware of the potential for people to become invisible in research. We all have the potential to be blinded by our own self-interests and the social, educational, and economic constructs that shape us. However, I would argue that, even more than in medicine, we have the responsibility to be entirely transparent with our research participants. We have a responsibility to ensure that participants understand the consequences of what we do, especially because they derive no immediate benefit. We don't necessarily cure them or heal them. This isn't easy and many of us fail at some point in our careers, no matter how well-intentioned we are. Most of us view cells as purely structural components, non-sentient and without feeling. However, imagine having an elementary education with no concept of what a cell is, and learning that a piece of your loved one had been taken, was alive, and was being experimented on. Imagine receiving a call from people with apparent social authority and hearing that they wanted to test your children after your wife died of a devastating illness. It's easy to see how the Lacks family would think they were being tested for cancer, and how it would terrify them when they didn't receive the results they thought researchers would return to them with. It doesn't matter what you know the cell to be. What matters is how they perceived them and that perception caused them pain. The lesson that Henrietta Lacks teaches us is as pertinent today as it was in 1951 when her cells were taken. Our actions, especially when we are blinded to cultural, economic, spiritual, and social differences between us and the people we use in research, have the potential to have devastating and lasting consequences. In that sense, we have a duty to understand our history as researchers in an effort to prevent the future abuse of research participants and their families. It's impossible to read about Henrietta Lacks without considering how racism and economics shaped the story. However, it's dangerous to assume that because social climates evolve, this could never happen again
This is the most fascinating true story! The author, Rebecca Skloot, was 27 when she first started covering the HeLa story, and guided us through the unbelievable events that followed over 50 years as she built a relationship with Henrietta's descendants. She restores a measure of dignity to the Lacks family who spent decades knowing little of the amazing contributions made by the cells that were taken, without consent, from Mrs. Lacks before her death from cervical cancer in 1951. This changed the course of history. This is a story worth keeping on your library shelf forever.
I am always looking for books that would be something to recommend to my students in my college classes that pull in the human side of how biology functions in their lives. This is one of those perfect examples of how science functions in human society. The idea that a human can be reduced to the title of a cell line, as in HeLa, is a disturbing side of the life sciences. I want my students to understand that biology has so many benefits for us, but that the power of science should be both simultaneously embraced and examined with suspicion. We need to see the human side of what we do in science, and this book by Rebecca Skloot has that power. She has shown us that we need the ability to learn about how we as humans function and eventually become dysfunctional as our systems fail through a myriad of events that are part of normal biological functioning. And that science attempts to find ways to stop the failings of our body. But sometimes the method does not always reflect positively on how we conduct science in our society. It is not possible to erase all the injustice in the system, but we need to remember the human face associated with the science of medicine. We want to do well by all involved, and this book opens a great dialogue on what lies ahead.
This is without question the best non-fiction book I've read in years. Skloot's debut is thrilling, original and refuses to be shoehorned into anything as trivial as a genre. Equal parts popular science, historical biography and detective novel, it reads as evocatively as any work of fiction. Skloot repeatedly appears as a character in her own book, narrating her journey from first hearing about HeLa cells in a classroom to her attempts to contact and support the Lacks family. Her narration reveals the trials that the Lacks family have undergone since Henrietta's cells went global, and the sheer amount of trust it took to uncover the details of this story. But this is really a book about three heroines - the two whose names grace the cover and Henrietta's daughter, Deborah Lacks. Skloot's personal mission to tell this story and Deborah's quest to know about her mother's life and legacy are central parts of Henrietta's story and they form some of the book's most compelling segments. I write this review as someone who isn't typically a fan of historical non-fiction. Particularly in popular science, I often find descriptions of researchers to be distracting attempts at shoehorning in a human element that is out of keeping with the rest of the book. Not so here - this work has the most human of stories at its core, and never deviates from that important, and often heartbreaking, humanity. When science appears, it does so effortlessly, with explanations of cell anatomy or techniques like "fluorescence in situ hybridization" seamlessly worked into descriptions of the coloured wards of Johns Hopkins hospital to Lacks's hometown of Clover, Virginia. Skloot's prose is witty, lyrical, economical and authoritative. But The Immortal Life of Henrietta Lacks is not a comfortable read. Learning about Henrietta's devastating radiation treatments, the history of experiments on black Americans and the events in the book's conclusion are heart-rending. But the story is uplifting too, particularly in a stand-out chapter where Henrietta's children, Deborah and Zakariyya, visit a cancer researcher to see their mother's cells under a microscope. All of this is to be expected of a book that refuses to shy away from tackling important themes - the interplay between science and ethics, the question of who owns our bodies, and the history of racism in the US. Actually considering these issues seems to be too much for some people, like the anonymous reviewer who appears to be attacking a straw-man version of the book. Those who actually make the effort to read the book and heart the story will be rewarded for it. For all its grand scope, skilful writing and touching compassion, there is one simple element that makes The Immortal Life of Henrietta Lacks an instant classic - this is one of those stories that genuinely needed to be told. By right, it will achieve the same immortal status as the cells it describes.
This is written like "can't put it down fiction". So much great history of cell culture, medicine and research, civil rights and patients rights, African American culture. Henrietta Lacks and her family are in my heart. FYI - some of the chapters in the e-book end in mid-sentence. I hate to miss a single word of this. Better get a paper copy and be able to read the whole amazing book.
I am thoroughly enjoying this book about someone I have never heard of but whom the world has greatly benefited from. This book is not a cut and dry documentary of cell research, but has inspired me to research into the subject a little further. I had heard about the horror stories of human research done without the subjects consent such as the Tuskegee Experiment and know of the African-American distrust of medicine because of it. This is the story of a woman's cells that helped create so-called modern miracles but her children to this day do not understand what was done with those cells or why. Some doctors are very good and talking down to the less educated and have an "I know what is best" attitude toward their patients in general, and while some may find it hard to believe that a physician would leave the patient and family in the dark, I know it is not that far-fetched, "just sign this paperwork" is something I have experienced myself. So while this book may not be an "unbiased" presentation of the facts, it is very enjoyable and could spark interest in science amongst young and old.
Harry S. Truman was President in 1951 when Henrietta Lacks died, but her cells and her legacy live on today. Known for years only as HeLa, the first "immortal" human cells grown in culture that continue to grow today. They have been and still are a vital medical research tool. For most of the past 60 years, scientists never even knew the real name of the woman whose cells sparked a spate of research in both the medical and pharmaceutical fields. A poor, unassuming and uneducated woman, Mrs. Lacks was treated in the Colored Only Section of Johns Hopkins University Hospital. Her husband and family never even understood just what lived on after her death; believing that a part of Henrietta had actually been kept alive. Her cells were used for wide ranging medical research over decades including polio research in the '50s, the effects of the Atom bomb, cloning, gene mapping and testing for the HPV (papilloma virus) vaccine, the first ever cancer vaccine that was approved in 2006, just to name a few. Add the civil rights struggle to this blend of science and personal information about Mrs. Lacks in Ms. Skloot's fascinating book. The very real human debate in the book centers on the untold millions made from HeLa research and the abject poverty her family faced. Her children were continually tested by researchers, even as they continued to live in poverty and ironically, without medical insurance. Mrs. Lack's legacy is heroic on so many levels, yet she rested for decades in an unmarked grave in her hometown. Ms. Skloot has written an amazing and thought provoking book that I thoroughly enjoyed and I highly recommend THE IMMORTAL LIFE OF HENRIETTA LACKS. Lynn Kimmerle
When I heard about this book on The New York Times, I knew I had to read it. I am a scientist that works at a cancer hospital and it seemed like a very intriguing book to me. After I was done, I realized it was one of the greatest science non-fiction books I had ever read. My whole job revolves around informed consent, which is mentioned quite frequently in the book. If Henrietta's cells were never taken without her knowledge, cancer research might not have been as advanced as it is today. I credit Henrietta for my job. I highly recommend this to anyone who wants to learn a good history lesson as well as several lessons on science, cancer, and cells. You will walk away touched by her family's story as well as in awe by the sheer magnitude of what the HeLa cells have meant to the science world. You'll understand the hardship and sacrifices that occurred in order for us to treat cancer today. It wasn't pleasant the way they treated people in the 50's and 60's but the product is undeniable.
If it were possible to give a book more than five stars this one would deserve more. I'm not generally a fan of non-fiction as it can often be a bit on the dull side. This book, this book was nothing short of extraordinary. Parts were breathtaking in the way they forced you to see our own history, parts were so full of emotion all you could do was wipe your tears as your heart broke, all of it leaves you forever changed in the ways you will view medicine, privacy, and your own healthcare decisions. More than anything else though you will find yourself incredibly thankful to all those who were the unseen, unknown sacrifices that resulted in so many medical advances. As I sat beside my husband's hospital bed today holding the finished book to my heart I wanted nothing more than to wrap my arms around the Lacks family and say "Thank you."
Well written, intimate and unbiased. It will make you think hard about research, ethics and the mytery of life. Bravo "Miss Rebecca"! This should be required reading for any ethics class or health care program
This was an amazing book combining science and a person/family's personal story. I had never heard of these cells before even though I am a nurse. I really enjoyed the personal story of the writer and the family. I was surprised at how much this book interested me. Even though there was discussion of science it was not overwhelming or boring. This writer obviously researched this subject for many years before this book was published. I absolutely Loved it!!
I really enjoyed this book. I work in medical research, and as a previous poster said, this should be required reading for everyone that works in the biomedical sciences. My only complaint is that I tried to read this on my nook, and it's not properly formatted for the device. Every few pages a few lines get cut off, and you need to adjust between font sizes to get all the text. I finally read it on the e-reader on my laptop. If you want the book, get the hardcopy, or plan on reading it on a PC based e-reader.
I usually read fluff--light mysteries or comedy stuff. Why in heck did I buy a book about human cells? I asked myself that when I first started reading this book. Then the book grabbed me. Yes, it's about the cells taken from a woman's malignant tumor, and it's about how they lived in labratories when all other cells before had died (it was 1951--these were the first cells to survive out of the body for any length of time). The cells multiplied, even after the woman was long dead. The book tells how the cells had been experimented on, the places they'd traveled (the moon for one), and the diseases they'd help cure. The book is also about the family of the woman and the author's struggle to find out what the heck happened: How the woman, Henrietta Lacks, had died; who she had been when she was alive, and how her family suffered because of her death and the mystery surrounding her death. The book isn't fluff, so it's a bit dryer than I'm used to, but I did read it to the end. I learned something about cells and about Ms Lacks' life and especially about her family. The author did a fantastic job of traveling around talking with the family, and traveling with Henrietta's daughter to try to learn Henrietta's medical history. I'd have said "to heck with it" if I'd been the one going though the ordeals of getting to know the family, but the author stuck with it, gaining an insight and affection for the struggling family of this woman. I'm glad I finished the book.
There is an implication in the book, that Henrietta, quite possibly, got substandard care because she was black. Their treatment often began later, medication was scarcer and black patients would not question white doctors who frequently treated them inequitably, in less than equal facilities. The alternate reason for her lack of diagnosis and, perhaps, improper treatment, is that those were the days when patients were kept from knowing the truth of their diagnosis because it was too frightening for them to handle. Yet, although there is evidence that she repeatedly complained, no cancer diagnosis was made until it was, abruptly, way too late and she died a painful, premature death, at 31. The despicable act of experimenting on humans, without their consent, was common practice even as late as the fifties, especially, it seems, in the black population. Doctors who thought of themselves as G-dlike, believing the results of their research ultimately justified the means they used, duped their ill patients, without warning or advising them, of what they planned. They were experimental subjects and had no clue. The author's research takes her to the landscape of Henrietta's life. At first, she was received by the family with skepticism, but in the end, they were very accepting of her effort to tell the world about their mother. The family had been abused by the medical profession. They were kept in the dark about their mother's illness and their lack of education kept them ignorant of the facts they needed to discover what had really happened. Had they understood, they quite possibly could have fought for an equitable distribution of profits, before the Statute of Limitations ran out. Sadly, while Henrietta'a cells afforded others, who had the means, innovative treatments, her own family could not afford anything but the most basic health care. It is hard to read about the poverty of the Lacks' existence and reconcile it with the wealth of information her cells have provided and the financial wealth, as well, that her cells have provided for those who used them to advance their research. Although they had so few creature comforts, no education and substandard health care, they had great faith and lived their lives supporting each other in life's unspeakably cruel arena. Most were proud that their mom's cells were able to advance medicine and save lives. They only wished it might have also been used to save their own. This is a sad book with tragic circumstances but the characters are real and so the impact of the story is profound. Life knocks them down and they keep getting up, trying to rise above the scars caused by the vast deprivation and evil around them and somehow they manage to face life in a simple spiritual way, with an ability to forgive. The component of faith, makes this book's ultimate message, more beautiful. As an aside, at one point in the story, Rebecca more or less tells Deborah that if her book is published she will start a fund for the education of Henrietta's heirs. I wonder if she kept her promise or if she, like others, simply used the Lacks family to advance themselves and their projects.
It's been a long time since I've read a book that I truly did not want to put down. If it hadn't been for the whole "need to feed my kids and such" I would have read it in one sitting. The story of the author's journey, Henrietta Lacks, her children, cell culture, research, how HeLa changed the face of cell research and medical progress, and the ethical questions it brings up is incredible! Ms. Skloot brilliantly and smoothly tells a story of overlapping circumstances that engages the reader and educates at the same time. Her research is thorough (before writing this review, I looked up many of her referenced source material) and I believe presents a full picture of both the personal and scientific stories. It raises many questions that the public should be asking - what should "informed consent" look like?; Should people be financially compensated for their tissues and cells?; What is John Q. Public's role in the advancement of medical science and progress for all?; Should Henrietta's family be compensated voluntarily due to the circumstances of how her cells were first obtained and because so many profound medical advancements & vaccines were a direct result of her cells? The list goes on. If you want an eye-opening, moving, educational, thought provoking experience then read this book, get a friend to read it, and discuss!!! I have been telling EVERYONE about this book!!! You will not be disappointed and wish you could do something - whether it's advocating for or against cell rights, or helping the Lacks family, or just being a more educated patient in your own healthcare!!
I actually read this book in the hardback edition before I bought my Nook. And it's a keeper. This is a very comprehensive book detailing the basis for most of todays' research on cancer. I am a nurse, having been in the industry for almost 44 years and yet a lot of this information was new to me. While the story is sad in some respects, without Henrietta, we may still be in our infancy in fighting cancer. My only hope is that her family will now get the respect and compensation due them.
The problem with this book, and several newspaper articles on it, is that it is seriously flawed reporting. The author appears to be trying to paint a story that does not exist, namely that Ms Lacks was deceived and her cancer cells "taken" from her. In fact, more than 50 years after Ms Lacks' death, there is still still no patient consent required for research on tissues once removed from the human body. So clinicians and researchers are still in no way answerable to the patient or the patient's family for research on or future applications of those cells or tissues, nor is the patient or their family responsible for the potential banefits or risks of use of the cells in research. A good reporter and unbiased writer would make this a prominent point, but it is seriously downplayed here in what appears to be a very misguided rush to make this story of aggressive cancer cells into one of prejudice and greed. It was not, and it is not, and this is a disservice to the public and to all readers. At the time when Ms Lacks died, researchers were in fact searching for a cell line that would survive in the lab under available lab conditions, that would enable further research to be done using that cell line - and they spent money and time finding one, one such cell line turned out to be derived from Ms Lacks cells. Did the HeLa cells take time and money to discover and develop into a research cell ine? Yes. Did the race of the patient have any impact on the choice of cell line studied? No. Was the Lacks family asked to pay for this research into the suitability of Ms Lacks cells for research? No. Were clinicians justified in talking to the Lacks family about their own health risks and running tests to ascertain their health status? Yes. Therefore the decision to turn the story of Ms Lacks cancer cells into an op-ed piece on greed and racial prejudice is not based on all the facts, but on the selective presentation of incomplete research on the topic, and the public needs to know this. The story of the origin and discovery of the HeLa cells line is well known in research and medical circles around the world, but this book does not do the story justice by telling it in the fair and balanced way that it deserves. It is an Op-Ed piece designed to promote one individual's sensational view only, and should be sold as such, not as science or as nonfiction.
Henrietta Lacks dies of cervical cancer at 31 years old, and her doctor discovers that the cells in her tumor behave like none he has ever seen before, growing easily and exponentially and can be readily supplied to researchers studying many deseases.. He shares his discovery with other freely and eventually, lots of others make lots of money manufacturing these cells, but her family never makes one dime. The author uncovers many references to help illuminate this grim peice of real medical history. You'll be touched by Henrietta's place in history and her invaluable contribution to the health of every person ever innoculated against polio or survived breast or cervical cancer. I could not put this book down. This story brings science fiction and humanity together in a unique and sensitive way. I plan on making a donation to the Henrietta Lacks memorial fund the author recently announced...as I am a survivor of the two cancers mentioned as well as a child protected from contracting polio. Her family deserves better than they got from medical professionals. The book never bogs down, and the sensitive manner Skloot weaves the strands of Henrietta's life with the lives of her surviving family and alternates their stories with actual medical and legal considerations is quite beautiful. Great Read.
Science isnt my strong point so i was a little worried the book would be too "scientific" but its more of a bio with hints of biology in it. I really enjoyed the book and the author did a wonderful job painting vivid images in my mind. I will never look at cells the same! The only reason why i rated it 4/5 was because after the story is done, theres about the 50 pages of arguement & facts regarding cells which was a bore to me and got skipped. Other than that... GREAT READ!!!
I have heard of HeLa cells before and wanted to know more but wondered how much truth would come out about them. I was pleasantly surprised to learn through this book an explanation of what "HeLa" is, but also the person, family, technology that made it all possible. The information appears thoroughly researched, more than one side is presented and the people involved are brought to light in an easily readable format. Although not a doctor myself, I learned much useful information & now understand how this story touches all of our lives today in one way or another. I will never sign what is today a "routine consent form" at a doctor's office again without remembering Henrietta Lacks & her family. I only wish that there was an organization formed that readers like me could contribute a small donation to help her family with their medical bills. $1.00 from everyone touched by this story could give back a little for what they have all done for us! This book makes you want to say "Thank You!"
This is one of the best books of the year!!! Well done! Keeps you reading well into the night, couldn't put it down!
This book was well researched and written. It was so informative and enlightening that I couldn't put it down until I had finished reading it. I would recommend this book to history buffs, medical personnel and especially medical students. Ms. Lack's family should be very proud of the many contributions she made to the field of medicine and Ms. Skloot for never giving up on Henrietta's amazing story. This story would make an awesome movie!