The Immortal Life of Henrietta Lacks
by Rebecca Skloot
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Description
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer, yet her cells--taken without her knowledge--became one of the most important tools in medicine. The first "immortal" human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer and viruses; helped lead to in vitro fertilization, cloning, and gene mapping; and show more have been bought and sold by the billions. Yet Henrietta Lacks is buried in an unmarked grave. Her family did not learn of her "immortality" until more than twenty years after her death, when scientists began using her husband and children in research without informed consent. The story of the Lacks family is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. show lessTags
Recommendations
Member Recommendations
VenusofUrbino If you like well-researched and well-written non-fiction like "Immortal Life" then you will also appreciate Mary Roach.
93
bunnygirl personal history and stories linked with the larger African American history. if you were wondering about Skloot's reference to the Lacks family being part of the Great Migration, this book explains exactly what it is and tells the stories of three families in a similar manner.
50
krazy4katz Reading "The Immortal Life of Henrietta Lacks," I was pained by the impoverished lives of people who still lived on plantations in the 1940s - lack of schooling, lack of health care, lack of any kind of decent housing etc. "A Lesson Before Dying" more directly addresses the life of people still living on plantations in the '40s. Even though I sort of knew this, it was an emotional shock to truly recognize that all the abuse and oppression did not end with the Civil War but was still there 80 years later.
40
sboyte Fascinating stories of the people behind great scientific discoveries.
20
LeesyLou If you have an interest in the social and personal ethics and background of medical care, this adds to your understanding. Minority cultures and personal medical ethics are equally poorly understood by many practitioners.
21
akblanchard In both books, journalists get personally involved with their subjects.
BookshelfMonstrosity Cell cultures are being used to study diseases as well as cure them. Learn about the cell cultures called 'HeLa' in The Immortal Life of Henrietta Lacks, and read about cell cultures' utility as a whole in Life Itself.
krazy4katz Both of these books capture and humanize the process of medical discovery and the experiences of the patients. Although the authors have somewhat different backgrounds — Rebecca Skloot is a journalist with an undergraduate degree in biology, whereas Rikki Lewis has a PhD in genetics — I think the discussion of the scientific issues and the ethical issues regarding informed consent would appeal to the same readers.
Truevine: Two Brothers, a Kidnapping, and a Mother's Quest: A True Story of the Jim Crow South by Beth Macy
akblanchard Unusual medical conditions and racism as experienced by African Americans in the Jim Crow South.
macart3 Deals with bioethics and human experimentation without others' consent.
12
nessreader Acts of exploitation by the medical establishment.
Limelite Scientific discussion of medical/ethical, and other considerations regarding patients' rights and the medical profession's responsibilities on the subject, as well as other pertinent procedures.
13
Member Reviews
Superb. Has it all: human interest, sympathy for hardship, page-turning story, clear and fascinating scientific explanation. Even elements of mystery: why this one woman's cells? why this extreme blanking out of Henrietta and her family? one more mystery: why has Skloot not published another book?
I actually started reading this book after reading an article about how it was required reading in some school, and some mother protested it as pornographic. My little mind went, wait, how could this be pornographic? It's a story about HeLa and the woman they harvested the cells from. So I read it. Not only is there not ONE reference that could be considered pornographic ( the only thing I think she could perhaps be referencing is the radiation treatment and the way they go about it in the 50s) but it is a sad, sad tale of what the medical industry has done to this family. Well written, poignant, and sad beyond belief. The very least this family should get is medical care, and the best of, for that matter. It really goes to show that show more the road to hell is paved with good intentions. The original doctor really, truly was altruistic is his endeavor to discover things to help the human race. He gave samples for free, to anyone who wanted them. Thereafter, the corporations took over, and anything they discovered (which are legion) while using the HeLa cells was used to turn a huge profit for themselves.
So, in retrospect, I guess it is kinda pornographic, in the manner in which Big Medical literally screws this family out of anything in compensation for their mother's (unknowing and unwitting) contributions to modern medicine. show less
So, in retrospect, I guess it is kinda pornographic, in the manner in which Big Medical literally screws this family out of anything in compensation for their mother's (unknowing and unwitting) contributions to modern medicine. show less
Since I'm someone who gets riled up thinking about Credit Reporting Bureaus making money off my personal financial information, I'm entirely sympathetic to Henrietta Lacks's family members' anger over the profits made by some in the course of culturing HeLa cells (initially taken from their mother's cervix) for scientific research purposes. Complaints by Henrietta's middle-aged children that although their deceased mother's cancer cells are immortal and world-famous and have made money for some and significant careers for many, they themselves cannot even afford medical insurance are revelatory. There is something very wrong with such a picture. Skloot's "Afterword" in which she summarizes the current state of tissue and cell "donor" show more rights, or lack thereof, is informative and unsettling. Who knew that a simple blood test, or infant circumcision, might mean that one's DNA may be stored, studied, bought & sold with few restrictions?
This reportage is heavy on the human interest story, a bit less so on the science detail. It made me think of Alice Notley's long poem, "In the Pines," in which Notley includes lines such as the following which seem to echo some of the issues brought up in Skloot's book:
"Keep your hands off my neurons."
"The code's not just genes but songs . . . . The code's not just genes but tears."
"I didn't give you genes, I gave you poems . . . . It's all the same being, wrapped up." show less
This reportage is heavy on the human interest story, a bit less so on the science detail. It made me think of Alice Notley's long poem, "In the Pines," in which Notley includes lines such as the following which seem to echo some of the issues brought up in Skloot's book:
"Keep your hands off my neurons."
"The code's not just genes but songs . . . . The code's not just genes but tears."
"I didn't give you genes, I gave you poems . . . . It's all the same being, wrapped up." show less
In The Immortal Life of Henrietta Lacks, Rebecca Skloot examines the life and legacies – personal and scientific – of Henrietta Lacks, an African American woman who died of cervical cancer in 1951, but whose cells live on from samples her physicians took during the course of her treatment. While the majority of Lacks’ family and descendants lived in poverty outside of Baltimore, scientists around the world made significant breakthroughs from tests they performed using her cells. Skloot chronicles not only the way the family began to learn of how their mother was used in experimentation, but also how she helped them to piece the story together. She alternates between the lives of Henrietta and her family from the earliest record show more until Rebecca contacted them, the trajectory of the first cultivated HeLa cells through their current place in laboratories around the world, and the development of systems of medical and legal ethics.
In examining medical ethics, Skloot uncovers a cavalier attitude that has run rampant throughout the field. For example, a New York oncologist injected HeLa cells into patients to see if they would develop cancer. When he was investigated and asked why he did not inject them into himself, Chester Southam replied, “There are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk,” though he had no trouble risking his patients’ lives (p. 134). Though he faced some repercussions and the NIH changed their informed consent requirements, it ended up having little long-term effect on Southam’s career (p. 135). The Tuskegee Experiments combined with black oral tradition telling of “‘night doctors’ who kidnapped black people for research” predisposed the Lacks family to treat with suspicion anyone researching Henrietta (p. 135). To them, the people at Johns Hopkins had taken advantage of their lack of education and Henrietta’s desperation. After all, doctors at Hopkins felt “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (p. 165). Discussing the lack of informed consent in a Hopkins study of lead levels in children, Skloot writes, “One judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi research… But today when people talk about the history of Hopkins’ relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks – a black woman whose body, they say, was exploited by white scientists” (p. 168).
The family only learned that Henrietta Lacks’ cells were still alive by chance when Bobbette Lacks visited a friend in 1973. That friend’s brother-in-law just happened to be in town and was a researcher who used HeLa in his work (p. 179-180). The family learned more partially through their own research, but also as they found themselves the subjects of reporters working for Rolling Stone and the BBC (p. 197, 218-221). Despite this attention and learning about the breakthroughs HeLa made possible, the family still struggled to make ends meet. In 2000, Deborah, Henrietta’s daughter, made it clear to Rebecca that she had to get the facts straight if she was to receive the family’s blessing in telling Henrietta’s story (p. 233). Her brother, Zakariyya, was even clearer when he said, “Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells – they get rich off our mother and we got nothing” (p. 247).
In summing up the then-current perspective on medical ethics regarding tissue samples, Skloot writes, “There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally required informed consent, because the law governing such things doesn’t generally apply to tissue research” (p. 317). Further, the law views samples as something a person voluntarily parted with and thus treats them akin to abandoned property or garbage (p. 317). Skloot concludes, “When it comes to money, the question isn’t whether human tissues and tissue research will be commercialized. They are and will continue to be… The question is how to deal with this commercialization – whether scientists should be required to tell people their tissues may be used for profit, and where the people who donate those raw materials fit into that marketplace" (p. 322). As an example, Ardais pays Beth Israel Deaconess Medical Center, Duke University Medical Center, and others for exclusive access to tissues (p. 322) while Myriad Genetics uses their patents of the BRCA1 and BRCA2 genes to control who and how breast cancer research is done (p. 323-324). While Skloot revealed the manner in which one woman and her family were taken advantage of by the medical system, she also demonstrates how Henrietta Lacks’ story fits into a larger pattern of exploitation. show less
In examining medical ethics, Skloot uncovers a cavalier attitude that has run rampant throughout the field. For example, a New York oncologist injected HeLa cells into patients to see if they would develop cancer. When he was investigated and asked why he did not inject them into himself, Chester Southam replied, “There are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk,” though he had no trouble risking his patients’ lives (p. 134). Though he faced some repercussions and the NIH changed their informed consent requirements, it ended up having little long-term effect on Southam’s career (p. 135). The Tuskegee Experiments combined with black oral tradition telling of “‘night doctors’ who kidnapped black people for research” predisposed the Lacks family to treat with suspicion anyone researching Henrietta (p. 135). To them, the people at Johns Hopkins had taken advantage of their lack of education and Henrietta’s desperation. After all, doctors at Hopkins felt “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (p. 165). Discussing the lack of informed consent in a Hopkins study of lead levels in children, Skloot writes, “One judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi research… But today when people talk about the history of Hopkins’ relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks – a black woman whose body, they say, was exploited by white scientists” (p. 168).
The family only learned that Henrietta Lacks’ cells were still alive by chance when Bobbette Lacks visited a friend in 1973. That friend’s brother-in-law just happened to be in town and was a researcher who used HeLa in his work (p. 179-180). The family learned more partially through their own research, but also as they found themselves the subjects of reporters working for Rolling Stone and the BBC (p. 197, 218-221). Despite this attention and learning about the breakthroughs HeLa made possible, the family still struggled to make ends meet. In 2000, Deborah, Henrietta’s daughter, made it clear to Rebecca that she had to get the facts straight if she was to receive the family’s blessing in telling Henrietta’s story (p. 233). Her brother, Zakariyya, was even clearer when he said, “Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells – they get rich off our mother and we got nothing” (p. 247).
In summing up the then-current perspective on medical ethics regarding tissue samples, Skloot writes, “There are, essentially, two issues to deal with: consent and money. For most people, knowing if and how their tissues are being used in research is a far bigger issue than profiting from them. Yet when this book went to press, storing blood and tissues for research did not legally required informed consent, because the law governing such things doesn’t generally apply to tissue research” (p. 317). Further, the law views samples as something a person voluntarily parted with and thus treats them akin to abandoned property or garbage (p. 317). Skloot concludes, “When it comes to money, the question isn’t whether human tissues and tissue research will be commercialized. They are and will continue to be… The question is how to deal with this commercialization – whether scientists should be required to tell people their tissues may be used for profit, and where the people who donate those raw materials fit into that marketplace" (p. 322). As an example, Ardais pays Beth Israel Deaconess Medical Center, Duke University Medical Center, and others for exclusive access to tissues (p. 322) while Myriad Genetics uses their patents of the BRCA1 and BRCA2 genes to control who and how breast cancer research is done (p. 323-324). While Skloot revealed the manner in which one woman and her family were taken advantage of by the medical system, she also demonstrates how Henrietta Lacks’ story fits into a larger pattern of exploitation. show less
What an amazing story! I could almost exhaust my supply of adjectives on this one - inspirational, appalling, infuriating. Upon learning of the development and use of the HeLa cells in a college biology class, Rebecca Skloot wanted to know more about the woman from whom the cells originated, but no information was available. It took 10 years, but she eventually tracked down much of the story of Henrietta Lacks, her family, and their treatment at the hands of the medical industry.
Henrietta Lacks was a poor black woman in rural Virginia. She developed a virulent form of cervical cancer, and was treated at Johns Hopkins. Without her knowledge, doctors cultured tissues removed during a biopsy. These became the first human cells to grow and show more reproduce repeatedly under laboratory conditions. Henrietta died not long after her diagnosis and treatment, and her husband was pressured to permit an autopsy, during which additional tissue samples were taken. Johns Hopkins freely shared these cells with other researchers, and they have been used in the development of many important vaccines and medications. Eventually the HeLa cells became an industrial product, which continue to be produced by the millions in for-profit laboratories. Henrietta's family learned of these cells some 20 years after her death, and they have never benefited financially from the production and distribution of the HeLa cells.
Add this to the list of infamous cases in which poor uneducated people, especially African-Americans, have been used for medical research without their knowledge or consent. Here's just one example, from pages 129-130: In the coming years, Southam injected HeLa and other living cancer cells into more than six hundred people for his research, about half of them cancer patients. He also began injecting them into every gynecologic surgery patient who came to Sloan-Kettering's Memorial Hospital or its James Ewing Hospital. If he explained anything, he simply said he was testing them for cancer. Got that? In the early 1960s, EVERY gynecologic surgery patient at a noted cancer research facility was injected in with live cancer cells...and none of them were informed or gave permission. Even more amazing, modern court cases have determined that you, as a patient, have no right to control the disposition of tissue removed from your body during medical tests or procedures.
While the HeLa cells have been invaluable to many of the medical advances we now take for granted, the belated discovery that Henrietta's cells are alive more than 50 years after her death, and that private cell labs have made enormous profits from them, has had a devastating impact on her family.
Skloot managed to explain the basics of cell biology in a way that should be understandable to most readers; she pieced together a picture of life in poor communities in the rural south; and she told the story of the Lacks family's mystical understanding of their mother's immortality. A compelling read, but it will make you think twice about your next medical appointment.
Update: As of April 2010, the Havasupai Indians have won a settlement from Arizona State University, for their research using DNA from blood samples given by tribal members in expectation of receiving assistance with their high rate of diabetes. Apparently the university had not limited their research activities to those for which they had permission. show less
Henrietta Lacks was a poor black woman in rural Virginia. She developed a virulent form of cervical cancer, and was treated at Johns Hopkins. Without her knowledge, doctors cultured tissues removed during a biopsy. These became the first human cells to grow and show more reproduce repeatedly under laboratory conditions. Henrietta died not long after her diagnosis and treatment, and her husband was pressured to permit an autopsy, during which additional tissue samples were taken. Johns Hopkins freely shared these cells with other researchers, and they have been used in the development of many important vaccines and medications. Eventually the HeLa cells became an industrial product, which continue to be produced by the millions in for-profit laboratories. Henrietta's family learned of these cells some 20 years after her death, and they have never benefited financially from the production and distribution of the HeLa cells.
Add this to the list of infamous cases in which poor uneducated people, especially African-Americans, have been used for medical research without their knowledge or consent. Here's just one example, from pages 129-130: In the coming years, Southam injected HeLa and other living cancer cells into more than six hundred people for his research, about half of them cancer patients. He also began injecting them into every gynecologic surgery patient who came to Sloan-Kettering's Memorial Hospital or its James Ewing Hospital. If he explained anything, he simply said he was testing them for cancer. Got that? In the early 1960s, EVERY gynecologic surgery patient at a noted cancer research facility was injected in with live cancer cells...and none of them were informed or gave permission. Even more amazing, modern court cases have determined that you, as a patient, have no right to control the disposition of tissue removed from your body during medical tests or procedures.
While the HeLa cells have been invaluable to many of the medical advances we now take for granted, the belated discovery that Henrietta's cells are alive more than 50 years after her death, and that private cell labs have made enormous profits from them, has had a devastating impact on her family.
Skloot managed to explain the basics of cell biology in a way that should be understandable to most readers; she pieced together a picture of life in poor communities in the rural south; and she told the story of the Lacks family's mystical understanding of their mother's immortality. A compelling read, but it will make you think twice about your next medical appointment.
Update: As of April 2010, the Havasupai Indians have won a settlement from Arizona State University, for their research using DNA from blood samples given by tribal members in expectation of receiving assistance with their high rate of diabetes. Apparently the university had not limited their research activities to those for which they had permission. show less
When Henrietta Lacks, poor and black, went to the doctor because of pain, a doctor took a sample of her cancer cells without asking her (or even telling her). Henrietta died, quickly and in great pain, and for her family, that was the end of it. For doctors, however, the story was only beginning, because Henrietta's cells lived on, becoming the first strain of cells hardy enough for testing and experiments. Doctors, hospitals, and labs around the world made great breakthroughs (and, not incidentally, a ton of money), while Henrietta's family couldn't even afford health insurance. Skloot covers issues of privacy and ownership and scientific gain, but the heart of this story is Henrietta's family, cut off and wounded, and their show more rediscovery of their mother. show less
A frank and fascinating piece of American history that has probably impacted virtually every person in the United States, but remains largely unheard of outside of the scientific community. This book is an impressive piece of investigative journalism, an interesting discussion on modern medical ethics and capitalism, an important primer to the public on genetic research plus a GREAT human interest story. I sincerely hope every medical school in the world makes this required reading and I'd wholeheartedly recommend it to everybody else just for fun and conversation value. You don't have to be a science geek or wear a white coat to enjoy this one. And I guarantee you'll view one of those medical release forms we all have to sign the same show more way again! show less
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ThingScore 100
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 show more facts.” Skloot’s book, her first, is far deeper, braver and more wonderful. show less
added by Shortride
I put down Rebecca Skloot’s first book, “The Immortal Life of Henrietta Lacks,” more than once. Ten times, probably. Once to poke the fire. Once to silence a pinging BlackBerry. And eight times to chase my wife and assorted visitors around the house, to tell them I was holding one of the most graceful and moving nonfiction books I’ve read in a very long time.
added by jlelliott
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, all driven by a galvanizing inquiry into the sanctity of the body and the very nature of the life force.
added by sduff222
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Past Discussions
Book Discussion: The Immortal Life of Henrietta Lacks ~ SPOILER FREE~ in The Green Dragon (August 2013)
Book Discussion: The Immortal Life of Henrietta Lacks CAUTION ~ Contains SPOILERS ~ in The Green Dragon (May 2011)
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Common Knowledge
- Canonical title
- The Immortal Life of Henrietta Lacks
- Original title
- The Immortal Life of Henrietta Lacks
- Original publication date
- 2010-02-02
- People/Characters
- Henrietta Lacks; Deborah "Dale" Lacks; David "Day" Lacks; Howard Jones; Richard Wesley TeLinde; George Gey (show all 50); Margaret Gey; David "Sonny" Lacks, Jr.; Elsie Lacks (nee Lucille Elsie Pleasant); Eliza Lacks Pleasant; Gladys Lacks; Johnny Pleasant; Lawrence Lacks; Loretta Pleasant; Tommy Lacks; Zakariyya Bari Abdul Rahman (nee Joe Lacks); Albert Lacks; Alfred "Cheetah" Carter; Alfred Carter, Jr.; Bobette Lacks; Cliff Garret; "Crazy Joe" Grinnan; Davon Meade; Fred Garret; Gary Lacks; LaTonya Carter; Margaret Sturdivant; James Pullum; Sadie Sturdivant; Alexis Carrel; Chester Southam; Christoph Lengauer; Emanuel Mandel; Leonard Hayflick; Mary Kubicek; Roland Patillo; Stanley Gartler; Susan Hsu; Victor McKusick; Walter Nelson-Rees; Courtney "Mama" Speed; John Moore; Michael Gold; Michael Rogers; Keenan Kester Cofield; Ted Slavin; Rebecca Skloot; Donald Defler; Johns Hopkins; Hela
- Important places
- Clover, Virginia, USA; Baltimore, Maryland, USA; Johns Hopkins Hospital, Baltimore, Maryland, USA; Maryland, USA; Virginia, USA; Dundalk, Maryland, USA (show all 8); South Boston, Maryland, USA; Turner Station, Maryland, USA
- Related movies
- The Immortal Life of Henrietta Lacks (2017 | IMDb)
- Dedication
- For my family:
My parents, Betsy and Floyd; their spouses, Terry and Beverly;
my brother and sister-in-law, Matt and Renee;
and my wonderful nephews, Nick and Justin.
They all did without me for far too ... (show all)long because of this book,
but never stopped believing in it, or me.
And in loving memory of my grandfather,
James Robert Lee (1912-2003),
who treasured books more than anyone I've known. - First words
- On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall.
This is a work of non-fiction. (A Few Words About This Book)
There's a photo of a woman I've never met, its left corner torn and patched together with tape. (Prologue)
When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn't it illegal for doctors to take Henrietta's cells without her knowledge? Don't doctors have to tell you when they use you... (show all)r cells in research? - Quotations
- ...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. People got rich off my mother without us even knowin abou... (show all)t them takin her cells, now we don't get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don't got it in me no more to fight. I just want to know who my mother was.
----Deborah Lacks
When I tell people the story of Henrietta Lacks and her cells, the first question is usually Wasn't it illegal for doctors to take Henrietta's cells without her knowledge? Don't doctors have to tell you when they use your ... (show all)cells in research? The answer is no--not in 1951, and not in 2009, when this book went to press. - Last words
- (Click to show. Warning: May contain spoilers.)"I think I'd like that."
(Click to show. Warning: May contain spoilers.)I hope readers will forgive any omissions. (A Few Words About This Book)
(Click to show. Warning: May contain spoilers.)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. (Prologue)
(Click to show. Warning: May contain spoilers.)"I just hope Hopkins and some of the other folks who benefited off her cells will do something to honor her and make right with the family." (Afterword) - Blurbers
- Conover, Ted; LeBlanc, Adrian Nicole; Schlosser, Eric; Orlean, Susan; Greene, Melissa Fay; Nelson, Alondra (show all 13); Zimmer, Carl; Roach, Mary; Blum, Deborah; Giddings, Paula J.; Hornblum, Allen M.; Wilson, E. O.; Mantel, Hilary
- Original language
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- Canonical DDC/MDS
- 616.02774092
- Canonical LCC
- RC265.6.L24
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