| List Price: | |
| Price: | $16.00 & eligible for FREE Super Saver Shipping on orders over $25. Details... |
| You Save: | $0.00(0.00%) |
| Binding: | Kindle Edition |
| EAN: | |
| Feature: | |
| Label: | Crown |
| Publisher: | Crown |
| Studio: | Crown |
| Tags: |
Editorial Reviews
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.
From the Hardcover edition.
Related Reviews
Thank you for this beautiful tribute to Henrietta Lacks
Good try, but could have been better
However, once I got to the second half, it went downhill considerably. The writing was fairly tight in the beginning, keeping all of the stories woven together in a comprehensible way, but seemed to unravel as the book went on. When I read the introduction, I didn't understand why Skloot was so defensive about inserting herself into the book (in my experience, medical non-fiction authors do it all the time), but I soon realized why - because by the second half, the book becomes less about HeLa, science, history, and ethics, and instead turns exclusively into a memoir about Skloot's dealings with the family. And at this point, the family became unsympathetic and insufferable. The writing became repetitive, somewhat informal, and ridden with unnecessary details. One reviewer called this book "deftly written" and I'd have to disagree. The second half gets one star.
The book ended on a strong note, with the Afterward. The Afterward took us back to questions of bioethics. As I was reading it, I wondered why the Afterward was a separate part - couldn't it have been woven into the second half of the book?
In short, I thought this book was merely ok, but as the reviews show, a lot of people loved it. If you think that you're one of the people who will love it, read it. If you're looking for a book that's just outstanding, look somewhere else.
A fantastic effort about the life of a forgotten woman
In early 1951, Henrietta went to the gynecology clinic at Johns Hopkins Hospital after feeling a "knot" in her womb. After she was taken to a "Colored" examination room, the gynecologist on duty found a firm mass on her cervix that seemed cancerous, but was unlike anything he had ever seen. He sent a slice of the mass for analysis, and Henrietta was soon diagnosed with cervical cancer.
Henrietta returned to Johns Hopkins a few weeks later, where she underwent treatment for cervical cancer. She was given a generalized consent form that gave permission for her doctors to perform any operative procedures necessary to treat her illness. However, she was not told that one of the staff gynecologists was collecting specimens of clinic patients with cervical cancer for a clinical study, and biopsies of healthy and cancerous cervical tissues were taken from her during her initial procedure. The cancerous cells, which were named HeLa after the first two letters of Henrietta's first and last names, proved to be the first human cells that could be grown indefinitely in a nutrient broth, and the Johns Hopkins researchers were overjoyed at this long awaited success.
The treatment she received at Hopkins was state of the art, but was unsuccessful, due to the aggressive nature of her primary tumor, and she succumbed to her illness several months later. The researchers wanted to acquire more specimens from her tumor ridden body by performing an autopsy with biopsies. Her husband, after initially denying a request for an autopsy, was misled into agreeing to allow the Hopkins pathologists to perform a limited autopsy, after he was told that the doctors wanted to run tests that might help his children someday.
The HeLa cell line was provided to scientists and organizations worldwide for minimal cost, as neither the researchers nor Johns Hopkins profited from the first immortal human cell line. However, a number of companies made millions of dollars by mass producing HeLa and selling them at a much higher cost. HeLa was used in numerous important biomedical studies, including the development of the Salk polio vaccine at the University of Pittsburgh in the mid-1950s, cancer and viral research projects, and studies of the effects of weightlessness and space travel on the human body by NASA.
During this time Henrietta's husband and children were completely unaware that her cells had been harvested for medical research by the Hopkins doctors. By that time most of them were living in poverty in Baltimore, and were unable to afford basic health insurance. Articles about HeLa began to appear in medical journals and in the lay press, but it wasn't until 1973 that the family accidentally learned about the HeLa cell line. The family was contacted by Johns Hopkins, so that their cells could be analyzed and compared to those taken from Henrietta 22 years earlier. Once again they were misled into believing that the purpose of these tests was to determine if any of her children also had cancer, which caused Deborah, Henrietta's oldest surviving daughter, many years of anguish.
Once Henrietta's name was released in the media, the family was besieged by journalists and others wishing to profit from her story, causing her husband and children to become distrustful and wary.
Rebecca Skloot became interested in Henrietta Lacks after hearing about the HeLa cell line and its forgotten host as an undergraduate student. She spent many months and countless hours attempting to contact the Lacks family, and she slowly but painfully gained the trust of Deborah and her siblings, after she promised to tell the family's story alongside the history of HeLa.
The Immortal Life of Henrietta Lacks is a fantastic achievement, given the hurdles that Skloot had to overcome to obtain information from the Lacks family, Johns Hopkins, and the other key actors in this story. In addition to an in-depth history of this ordinary yet quite remarkable family, she provides just the right amount of information about HeLa and what it meant for biomedical research, along with information about informed consent from the 1950s to the present, the effect of race on medical care in the United States and the views of African-Americans toward medical experimentation, and the biology of cancer. The book is meant for a lay audience, but it would be of interest to those with a formal medical background. I found the book to be a bit overly sentimental and personal at times, but this is a very minor criticism of a fabulous book.
My criticisms:
The author spends a rather substantial portion of the book describing her own efforts. It didn't add to Henrietta's story and leaving it out would have made for a better, more concise narrative.
Black people were treated inhumanely to say the least (go look up the Tuskeegee Syphilis Study, for example). At the risk of sounding callous, this is well trod ground and some of it could also have been omitted for the sake of brevity without losing any of the story's impact.
Lastly, there is an implicit condemnation of the doctors that took her cells (the author does say that this was "common practice" at the time). I can tell you that as a former cancer patient who has been biopsied more times than I care to remember, once a doctor removes something from you, it's gone. They are not going to pay you for it.
Those criticism aside, this is a worthy read.
Way too much from way too little
Suffers from "authorized biography" syndrome, but good
Bring Henrietta Lacks to life as a person, not just the unwitting contributor to scientific research
Frame HeLa cells so that the non-scientist will understand, and the scientist will not get ticked off
Show that the family was hurt by the harvest of HeLa cells, and that they deserve monetary compensation for all the cells continue to do
Show the story of the author's (good lord!) ten years of research
Henrietta was a tragic figure with or without HeLa cells. Her inbred, uneducated family was in crisis before even she was born. While the author tells a good story about her life, anybody's life, well-told, is interesting. Because she would lose cooperation if she criticized them, Skloot had to tread with care. So there's not a whisper of anger about Day (her 19 year old cousin) impregnating 14-year-old Henrietta, giving her multiple STDs, or the violence in the family (some of it even from Henrietta). Did Day rape her? While the law may have been different long ago, there is no state in the US where the age of consent is as young as 14, and age differences between partners affect the seriousness of the crime. (Similarly, the fact that "stalking" didn't even have a definition until recently did not make it ethically right before there was a law against it.) Day was 5 years older than Henrietta.. In addition, it later was part of her medical record that Henrietta disliked sex. Yes, Day raped his cousin.
The author's doggedness in her research is impressive, and the trust she engenders is, as well. Even if not a penny of the book comes to the family, Skloot has done them a favor by giving answers they not only would not have found, but would not think to ask.
Skloot succeeds unevenly. I'm just not convinced the family is entitled to anything. Do Jenner's descendents get money from people who didn't die of smallpox? Or from those who sold smallpox vaccinations? And Jenner was even aware of what he was doing. The Lacks family had no knowledge and very little interest in the good HeLa cells could do, even toward the end seemingly more interested in whether Henrietta could be thought of as immortal because of the cells than in the difference they could make.
But it's a good story. You care about the family by the end. And the science is well-told. A good book that makes me think.
One of the best books of the year
Science writer Rebecca Skloot learns about this "immortal" cell line, now called HeLa, as a high school student. Intrigued by the woman who "donated" them, she begins a journey of uncovering the life of this person. As a white woman, she discovers that getting to talk with the family, who is justifiably suspicious of her (the white community is only interested in black folks when they can make a few bucks off them). However, persistence and determination, as well as student loans and credit cards, allow her to get to know the family, especially Henrietta's daughter Deborah.
As Skloot states at the end of the book, Deborah is the emotional center of the story; a woman so wanting just to get to know the mother she never knew (Henrietta died soon after her diagnosis). Lacking a high school education, Deborah had a dictionary and an insatiable stream of questions that would lead her to the truth about her mother. Skloot befriends her, and together, they get to know this woman by interviewing relatives, visiting homesteads, and even taking an emotional journey to Johns Hopkins to see these amazing cells themselves. Deborah is challenging, strong, and compelling.
Through this journey, the book wanders its way through racial identities in America, and how the African American community was treated by the medical community, especially in the early part of the 20th century. Poverty, medical ethics, and familial ties all play significant roles in this story. Skoolt masterfully blends all elements equally well, telling a story that is complete and compelling.
This book is a must read, for everyone.
The science part was interesting
I disagree with the previous reviewer who stated that the author should have kept her process out of the story. This isn't reporting, it's literary fiction, where the author's voice is not only welcomed, but part of the convention. I think it's more honest for Skloot to have shown her own background and mistakes, so that this becomes part of the larger picture. Isn't a major element of the Lacks family's history that no one has cared to include them, while using Henrietta and the family to advance their own careers and knowledge? They were left completely in the dark about the science and why it was so important. Reporters used them to get a story, but never helped them understand.
Of course, it's not that simple. The family members suffer from systemic racism, a lack of formal education, and their own shortcomings. And many researchers behaved admirably toward them (the young scientist at the end of the book was especially touching). Personally, I love that Skloot includes the whole, messy story, not sugar-coating anything. The science is fascinating, the human interest angle thorny but also moving.
Hands down one of the most compelling book I have read
Rebecca Skloot's work is not a dry review of what the cells are or how they were used. Skloot uses this magnificent line of cells as the spring to dive into the live that created them, that of Henrietta Lacks, a black woman who ultimatly died from the cancer that was created by these same sells.
Skloot digs deep into a life shrouded in mystery - a woman who was deeply loved and missed by her family members once she died, and the science industry that took her cells, propagated them in the name of scientific discovery, and then used and confused her family in the years afterward. The poverty of Mrs. Lacks childhood, and her family plays a significant role in how communications and silence between blacks and whites, males and females, educated and under educated occured leaving Lack's children - especially her youngest daughter - feeling as if the world had a better grasp on who Herietta was than they do.
What emerges is the painfully poignent story of a family left behind and used and tired of people calling them up to tell them who Henrietta Lacks was, and defining her only as a vessel by which the HeLa cells were created. The author diviates from that one track thought process by involving the reader with yearning that she had to know the woman who made these things possible. As the reader I wanted to know this woman, to have coffee with her, to hear her talk about her thoughts, her aspirations and her fears.
The prose of this book is readable and it is compelling. In all honesty, the last book that grabbed my attention as this book did to me was the DaVinci Code.
The Immortal Life of Henrietta Lacks will give a greater appreciation for the woman that she was and will raise ethical questions in your mind about life, race, education, poverty and our own control over what happens to tissues taken and examined in our own lifetimes.
This is a great book!
It's Exploitation, All Right . . .
The rest of this book - the story of Henrietta's family - gets zero stars. It's ironic that Skloot spends the majority of this book shaking a stern finger at the biopharmaceutical industry for "stealing" Henrietta's cancerous cells and, after spending millions of dollars and thousands of hours growing them into viable cell cultures, "selling" them for (GASP) PROFIT! It's exploitation the author tells us - sheer, unadulterated exploitation of Henrietta and her family by the biopharmaceutical companies. As evidence of this damaging exploitation, Skloot offers the tale of the sad wreck of a family left behind by Henrietta.
Clearly, this was a family in crisis long before Henrietta even fell ill, and blaming the biopharmaceutical industry is ludicrous. Thus, it's here that Skloot veers horribly off course, and begins her own exploitation of the Lacks family. It's all here - the incestuous "marriage," the extensive in-breeding and resultant genetic consequences, the infidelity, the mental illness, the reactionary ignorance and the naked greed. The story is sad, distasteful, fascinating and guaranteed to sell books.
Presumably, Ms. Skloot is profiting from the sale of this book, and unless she plans to share those profits with the Lacks family, this book is nothing more than a brazen example of breathtaking hypocrisy.
50% Biography + 50% Science = 100% Fascinating
I have worked with HeLa cells many times during my career in microbiology, and I've always wondered about the woman from whom they originated. I was always very much aware that behind every one of the medical tests I performed lay a real person whose life might depend on the accuracy and insight of my work. I wanted to know as much as possible about that person, both to keep my focus on the real reason for the work I was doing, and to gain insight that might contribute to the patient's diagnosis and treatment.
And although I knew that "HeLa" had died in 1951, I felt the same way about working with the cells from her malignant cervical tumor. I wanted to know more about her, to always be aware of and empathetic to the real person and her suffering. But I graduated before Rebecca Skloots did, at a time when even less was known about "HeLa." I didn't know Henrietta Lacks' name, that she was African-American, her age when she died, or how long she was ill; and I had never seen the photo of her that is now so famous. I wondered whether she had any children, and what became of them when she died.
So I was thrilled when this book came out, and it has been on my "priority tbr" list since I first heard of it. It lived up to, and even exceeded, my expectations. It answered all my questions, and brought up many new ones, the answers to some of which may never be known.
Henrietta's life was a hard one. She lost her own mother at the age of four and was raised by her grandparents. Life for her was an endless struggle against poverty. But one thing she did have was a large and close-knit extended family. Even without a mother, she learned well the arts of caring and nurturing; and all of her adult life she fed and took in other family members who needed help. She married a cousin with whom she'd grown up, and they had five children. There doesn't seem to be so much as a hint of a rumor that she ever had any other lover in all her life. But life was unfair to Henrietta. Her husband was a notorious philanderer, with the result that she was constantly plagued by sexually transmitted diseases. One of them - HPV - gave her cervical cancer and was also the reason for her cells' immortality. (Normal cells live for only about 50 divisions, then die. But the HeLa cells cultured from Henrietta's tumor are still living and reproducing sixty years later, and that is what makes them so valuable to science.) Henrietta had three venereal diseases at the same time during her cancer treatments. Her cancer was incredibly aggressive, and she died after months of terrible agony. One can only hope that her spirit survives somewhere to know that the tragedy of her life was given meaning by her contribution to medical science - arguably the most important in the history of medicine.
The story of Henrietta's older daughter Elsie is even more heartbreaking. She was born deaf, mute, epileptic, and perhaps retarded due to congenital syphilis (meaning she contracted it in her mother's womb. All 5 of the Lacks children suffered neural hearing disabilities from the same cause.) At least one family member believes that Elsie may not have been retarded at all, but was simply unable to communicate due to her deafness. No matter what her IQ might have been, her story is utterly horrifying. A photo of Elsie from when she still lived at home shows her to be a strikingly beautiful child; and also clean, healthy, and happy. But when Henrietta became so ill, she could no longer care for her daughter and Elsie was institutionalized. What happened to the 11-year-old girl in the Crownsville State Hospital for the Negro Insane is so shocking and awful that it's almost unbelievable. This part of the book is very difficult to read, but it's important that people know - both to honor Elsie's memory, and to make sure that such things do not happen again.
Henrietta died before her younger daughter Deborah was old enough to remember her, and Deborah was to spend the rest of her life longing for information about her mother and sister, trying to forge some kind of connection with her lost ones. Deborah's help and commitment to finding the truth was vital in the writing of this book.
Sloot comes across as sincere and as having developed a genuine and lasting bond with Henrietta's family, rather than as simply a dispassionate and objective reporter. This was instrumental to her research, as the family had been "burned" several times by unscrupulous characters who only wanted to cash in on the story for their own profit. It made the Lacks family defensive and ultra cautious. Before Skloot could even begin writing the book, she first had to win their trust. And she does seem to have honored that, by setting up a scholarship trust fund for the education of Henrietta's descendants and donating a portion of the book's profits to it. Another, indirect, result of this book is the donation of tombstones for Henrietta's and her daughter Elsie's previously unmarked graves.
The information given in the book about the ways in which Henrietta's cells have contributed to science and helped other people is fascinating and amazing! Without HeLa, the polio vaccine and the most effective cancer medications wouldn't exist; nor could the HIV virus have been identified. And these are just the beginning: the list goes on and on.
The book concludes with a thorough discussion of the ethics of medical research on human tissues. Henrietta's sons have a strong sense of injustice that their mother's cells were taken without her knowledge or permission, and that so many people have made vast amounts of money off of them while her children cannot afford basic medical care. And who can blame them? They do have a point. Patient privacy is another problem that arises when working with human cells, especially now that their DNA can be fingerprinted. Skloot interviews many experts with widely varying opinions about these issues, and shows us how extremely complex the matter is, with no easy answers.
The book includes some great photos. And if you go to the author's website, you can see many more photos, including some of the ones described but not included in the book. [...]
My one criticism of this book was that it left some questions unanswered that probably could have been answered. Especially - and this one's driving me crazy - what were the caged creatures that frightened Margaret Lacks so, when she got lost in the basement of Johns Hopkins Hospital - the "man-sized rabbits"? (I'm guessing kangaroos.) Also, why were Henrietta's children allowed to be born with damage from congenital syphilis? Why wasn't Henrietta treated for it? Her first two kids (including Elsie) were born at home, so she probably didn't have access to professional medical care at that time. But the others were born in hospitals. Was it that she didn't have any prenatal care, so that by the time she was in labor it was too late? Or that the effective penicillin treatment wasn't commonly available yet? Was it available but not given to indigent black patients?
I also noticed that Skloots uses the inaccurate term "hereditary syphilis" rather than the correct "congenital syphilis." But given the extensive amount of research she did (the book took 10 years to write) I suspect that was a deliberate choice rather than an error. Skloots may have felt that readers without a scientific background would better understand the word "hereditary". Actually "hereditary" refers to features that are inherited by way of genes; "congenital" simply means that a person is born with some condition, and it may or may not be hereditary. Syphilis is not a genetic disease, but one that comes from being infected by the microorganism. In congenital syphilis, the fetus is infected while in the womb and the disease has already caused permanent damage by the time the baby is born.
Further evidence of the massive research project undertaken by Ms. Skloots can be seen in the appendices. The "Acknowledgments" section is actually interesting to read, as it gives further information about members of the Lacks family and their story. And beware when reading the "Notes" section - as well as thousands of technical scientific articles, it describes hundreds of interesting-sounding books for further reading that might threaten to overwhelm your tbr list!
Oprah Winfrey and Alan Ball are working together on producing a movie based on The Immortal Life on Henrietta Lacks. Thanks to this book, Henrietta and her family are finally getting the recognition they deserve. On the inside back of the book jacket, there is a website address given where you can donate to the foundation for the education of Henrietta's descendants. I hope that everyone who reads the book will do that, even if they can only afford a small contribution. [...]
(358 pages)
Great mix of biography and science, but too drawn out
A great story dragged through the mud
Although the book starts off this way, it was as though the publisher kicked back the manuscript and said "more sex". Awkward passages appear about incest in Henrietta's family, then more stories about her relatives trysts that bear no value in the telling of Henrietta and her cells or of the science or scientists that studied them.
Soon, the book drones on and on about her second and third removed relatives sexual relations and complaints of: "po me" and "I ain't got no money" and "white folks stole her cells" when, in fact, her cells were harvested at a time when no one was paid, no permissions were customarily asked, and the authors own book conveys a time in medical research where medicine was more collaborative than today when patents are issued on human genes that we all share.
After giving the author most of the first half of the book to get her story back on track, I popped the audio CD out and gave it away to a physician friend who had worked with HeLa cells and might get farther than I did. Too bad this interesting story was dragged through the mud of life of her uninvolved relatives.
BUT, the book devolved into a bloated history of the tenacious efforts of the author to get close enough to the family to get their stories, as well as their various stories. Some of it was interesting, some was simply TMI. And, although those stories shed some light on the consequences of the "medical apartheid" of the 50's, 60's, 70's etc., they also showed the family as rather dysfunctional and apparently greedy in a selfish sounding way, making one wonder about their claims for the profits that came not only from their mother's cancerous cells, but the dogged efforts of scientists to use them for the benefit of others (and the pioneers did it with no thought of monetary reward).
Additionally, although there were more acknowledgments than in 10 average nonfiction books, with multiply redundant readers and fact checkers, some statements crept in that were either scientifically/historically inaccurate, or simply conjectures. These seemed to serve a polemic purpose that didn't fit in with an accurate history, and weren't really necessary; there was already plenty of info in the book about how badly poor black people were treated by society, including academic medicine.
For those who care, I'm referring in part to Henrietta's mentally challenged/damaged daughter (and who gave her congenital syphilis, the evil, white medical establishment?), who, according to the official at the state hospital, probably? (not certainly) underwent pneumoencephalography, which the author describes as a barbaric study involving drilling holes in the skull. Yes, the procedure started that way in the early century, but by the time the daughter might have been studied, it was routinely done via a lumbar puncture. It was not a benign test, but there were no CT or MRI scans in those days, and it was also done on patients who weren't poor or black or confined to awful state institutions. (I don't discount that whoever had it at that institution probably didn't give informed consent.)
Soon thereafter, the author described daughter Deborah's hives and erratic behavior as likely related to uncontrolled diabetes and hypertension. I've seen plenty of that, and that's not a conclusion I would jump to. And what does all that have to do with the primary story? The bulk of the second half of the book was the bonding of the odd couple Rebecca and Deborah, not Henrietta and HeLa cells.
These may be minor points, but for me they detracted from the overall impact of the story, and I couldn't help but wonder if there were other questionable statements in the book, even if I didn't have the knowledge to question them.
The author stated that the book was edited down considerably. Not enough, IMO.
Truth is Always Stranger Than Fiction
This Review Doesn't Do It Justice, Read it For Yourself!
Henrietta's cells are still reproducing. They are bought and sold to labs all over the world by the billions. It is said that if one were to weigh all of Henrietta's cells that have been grown since she died, the total would be a staggering 50 million metric tons. These immortal cells have been one of the most important innovations for modern science and medicine because scientists can study the effects of experiments they cannot perform on living people. HeLa cells were on board during the first space mission so scientists could study what happens to human cells in space. Because of HeLa cells, scientists know the effects an atom bomb has on human tissue. Henrietta's cells were also instrumental in developing the vaccine for polio. They have been the cells used in studies for in vitro fertilization, chemotherapy, cloning, gene mapping, and much, much more.
Skloot's teacher off-handedly mentioned that Henrietta was African-American. But Skloot's questioning about her personal life met a dead end, and the consequent researching revealed nothing about her. She became obsessed with Henrietta, and her fascination turned into a passion that she pursued for 10 years in order to write this book.
One of Skloot's driving questions was about Henrietta's family: Did she have children? Did they know about their mother's cells and their contribution to science? She not only learns the answers to these questions, she also forms a relationship with Henrietta's daughter, Deborah. Along the way, we learn about Henrietta's life. As part of a poor tobacco farm family, young Henrietta lived with her grandfather after her parents died. She and the rest of the family worked the same tobacco fields that their ancestors worked as slaves. After marrying her cousin, David, Henrietta's life continued to be difficult. She had her first child when she was barely 14. The second child she bore had developmental challenges and was reluctantly institutionalized. Despite her hard life, the people who knew Henrietta remembered her as beautiful, outgoing and hospitable.
As Skloot skillfully weaves together the stories of Henrietta, the evolution of her immortal cells and the reactions of her family members, readers will find themselves entranced. Exploring the topic of scientific exploitation --- in which her cells have been used and sold without family knowledge or consent --- leads to a description of the historical use of African-American research subjects and to a discussion of the policies and ethics governing the use of patients' tissues. During the course of the book, we travel with the writer to Henrietta's unmarked grave, to scientific laboratories, and to a church service. We are present during a touching scene in which two of Henrietta's children examine HeLa cells.
Interspersing these human elements with scientific explanations, Skloot has fashioned a compelling multi-layered tale that will keep readers unable to resist turning pages until they reach the end.
Great book for Nursing / Medical Students
In undergrad nursing school you heard about HeLa cells in microbiology and in other courses, but you never knew more than just the name and uses.
The story behind the cells is not only fascinating but heart wrenching and infuriating.
As a woman, a southerner, and a medical professional, my heart goes out to the Lacks family.
This book was well researched, well written, and I hope they make this into a documentary.
Read this book if you are in the medical field. Read this book even if you aren't in the medical field.
Either way, just read this book.
Educational, remarkably true story.
Something every doctor and researcher should read
Dr. Timothy Drevyanko, MD, MS
Most of the reviews I have read complain that the cells were taken without consent and that vast riches have been gleaned at the expense of the Lacks family. In addition there is accusation that white scientists have exploited impoverished African American patients with clear racist impications. Most of these allegations are completely false.
While the tissue biopsy was taken without consent, this was common practice at the time and many years would pass before informed consent would be introduced. The researcher who successfully cultured the cells, Dr. Gey, visited Ms Lacks in the hospital and informed her of the cultures, to which she expressed a hope that they would be useful. This is described in the book. Hundreds of thousands of samples have been collected from patients in the same manner and are currently used for research and stored frozen. The unique property of HeLa cells that made them so useful then and now is their ease of culture. Other extremely useful features are that they do not die after several doublings, but are immortalized, and also that they grow in suspension culture, allowing large quantities to be grown without undue labor and expense.
In my experience, cultures were freely exchanged between scientists on request. I never heard of anyone purchasing them. Maintenance of a cell line does require some effort, and if anyone wishes to perform this service they are entitled to a fee. The ATCC does this, but it should be emphasized that it is a non-profit organization. The implication that huge fortunes were made by commercializing these cells is likely to be fantasy. Johns Hopkins and George Gey did not patent the cells or restrict their use; indeed, they gave them away to any researcher who might find them useful. If the cells had received a patent, it would have long since expired and anyone who wished could have used them for free since around 1970.
Lastly, the book points out that Johns Hopkins was intentionally located in a poor section of Baltimore in order to be of service to the underprivileged. The allegation that it exploits poor African Americans is disingenuous and unfair to the dedicated men and women who work there in service to science and medicine.
In closing, I will add my voice to the chorus of appreciative readers who were entertained and informed by this brilliantly written book. My only reservation is that some wrong conclusions were drawn by implication. While scientific inquiry was greatly enhanced through the use of HeLa cells as an investigational vehicle, the Lacks family does not have legal claim to compensation any more than they can rightly claim the royalties from this book.
Excellent History and Extremely Well Written
Don't get me wrong; the "science" in the book is fascinating and is, of course, the reason for the book. I started reading it with no knowledge that there even was such a thing as HeLa cells, that have been alive for 50 years, being bought, sold, traded, given away, researched and contaminating other cell cultures the world over all that time. I am grateful for this glimpse into an aspect of medical research and science that I never knew existed.
For some reason, though, the early flow of the book just didn't grab me; maybe it's the way it went back and forth from present to past to "middle past," switching from personal stories to medical research. I kept feeling like I was missing something, or had forgotten something, or had lost my place and had to figure out where to pick up the thread again. The whole thing seemed repetitious at times, while at other times the author seemed to jump into different areas with little background information. Maybe it's just me; it's obvious she did her research, but at times I just didn't feel like it was pulled together very well. Overall, the book just seemed longer than it needed to be.
Nevertheless, in the end this was well worth the read, even leading me to do a bit of follow-up research on my own on certain aspects of the medical science, as well as Henrietta and her family, that piqued my interest while reading the book.
There are books I have given up on completely; I'm happy this was not one of them.
I appreciate that this was a tale not just of Ms. Lacks, but of her family and the author as well, with fascinating excursions into the world of science and the often unfortunate sociology of the twentieth century. I found the family engrossingly human, presented with all their beauty and warts and in their own voices. There are heroes and villains among the scientists, legal system, and unrequited gene and tissue donors, plus the suspense of a good mystery--how will this or that situation work out? What will happen to this or that character? Hence the all night reading. I love that in a book. Decades of events braided together like a good hair weave, too. Wow. Highly recommended!
This book should give you pause
Henrietta Lacks was an African-American woman who died of a particularly virulent form of cervical cancer. During the course of a radiation treatment, her doctor cut some cells from her cervix and sent them to be cultured. He did not ask Henrietta for permission to do this or even tell her or her family that he'd done it. It was 1951, and there had never been any serious discussion of the ethics of collecting biological samples, or of the patients' rights regarding the disposition of those samples. That the doctor never really expected her cell line to survive doesn't matter; he did something that had the potential for unforeseen results. And as it happened, Henrietta's cancer cells did survive. They were the first human cell line to survive in the lab, and they not only thrived, they multiplied at an astounding rate. The line was named HeLa and as soon as it was clear that these were strong, viable human cells, researchers began to share them with one another. Before long, Henrietta's cells were all over the world being used in studies not only of cancer, but other diseases, being sent into space and exposed to the effects of a nuclear explosion. Henrietta's cells outlived Henrietta; they were referred to as "immortal."
Science writer, Rebecca Skloot had read about these immortal cells in school, and determined to find out more about the woman from whom they'd come. She made contact with Henrietta's family -- husband David and four living, adult children -- and was met with active hostility. The Lacks family had only found out about the cells decades after Henrietta's death. Since then, their desire to know the details of her illness and death had been met with evasion, condescension, lies and even attempts to scam them. It took a long time to win enough of their trust to begin to work with them, but Skloot persevered. She did her homework, she learned a great deal, not only about the medical standards and practices of the post-war era, but about the vast inequities of medical care with regard to race. When she was finally able to speak to the family, she was prepared to help them wade through the morass of information about Henrietta and her immortal cells. I doubt much could have prepared her for the mistrust and misinformation she dealt with, but Skloot remains utterly non-judgmental. She no apologist for either side, but rather and in spite of her obvious affection for Henrietta's daughter, Deborah, a dispassionate eye, reporting facts without prejudice in either direction. She allows the players to speak for themselves in their true voices, and by doing so, allows them to explain who they are and what their concerns are.
I suspect this book is going to raise a lot of strong emotions in its readers. There will inevitably be anger at the abuses, both real and perceived, by the medical and scientific communities. Some will be justified, some displaced anger over the current state of care in this country, and some just flat-out based on a lack of understanding. There will be people who judge the Lacks for their lack of education and the (often understandable) paranoia about the motivations of people who are concerned with Henrietta's cells. Some will be as paranoid as the family itself. But what Skloot set out to do -- show us who Henrietta Lacks was and what her gift to the world has been -- is the one message all readers should take from this book. Once we lose sight of someone's humanity, once they become to us nothing more than a disease or a mass of cells, we begin to lose our own humanity. Skloot never loses sight of this single most critical issue; these are real human beings with all their flaws and very human concerns. Beyond a story of a scientific milestone, this book is being a family, and about being human.
All Medical Field Students put THIS book on your reading list!
The medical world is full of discovery, cure, treatment, heartache but always there are opportunities to do things better. It is far too easy to slip into a world of routine where patients become 'names' or worse yet 'numbers' or are known by their diagnosis. How often do we in the medical world hear 'have you got the lab results back yet on 'my' bowel resection?' or 'heard about your new leukemia...bummer'.
ALL patients are people first; patients second. They are someone's mother, daughter, co-worker, friend, child. I used to look at a vial of blood sent to our lab to be tested and think, 'this is not just blood...it is the life fluid of someone's father...it could be MY father'. To not think this way would make me guilty of the robot-like attitude that many adopt and exhibit.
This book put a name, a face and a family to what I...no, what WE...only knew as 'HeLa' cells. These cells changed the face of medicine, research, treatment and medical ethics forever. Henrietta changed the face of medicine, research, treatment and medical ethics forever. She and her family deserve respect and recognition for their part. This book is a wake up call.
If you're a student entering medical school, nursing school or in the paramedical careers, do yourself, and all your patients for years to come, a real favour and read this book. You will never, ever refer to a tissue, vial of blood or Room #34 as 'your bowel resection' ever again. And you will be a much better medical professional for that.
Talented Writer but Boring Story!
I would say that this was a valiant attempt to write a biography on a limited subject by an obviously talented writer, but the subject matter just wasn't compelling enough. I honestly can't wait until Rebecca Skloot gets her hands on a more complex, interesting story (perhaps with some science intermingled in the storyline since her background is in scientific writing). But for now, sadly, I can't recommend this book.
One of the best nonfiction books I've ever read.
I also admire the way that Skloot puts herself, and her journey, into the narrative. Her relationship with Henrietta's troubled but gentle-spirited daughter was, for me, one of the most moving parts of the narrative. At the end of the book, you find that Skloot has established a scholarship fund for Henrietta Lacks' grandchildren, who remain impoverished despite the billions of dollars that have been made from their grandmother's cells. I definitely intend to visit the website and make a contribution, and I'm sure many other readers will do the same after reading this book.
Read this with Emperor of All Maladies
Create your own review



1. The author clearly developed a strong relationship with the Lacks family, which was absolutely critical to ensuring the story was told accurately and with the respect to Henrietta Lacks that was so deeply deserved.
2. The storytelling is amazingly moving despite the need to convey a lot of scientific information. It reads like fiction.
3. Ms. Skloot's research into the science is impeccable.
4. The book is FAIR. It presents the unvarnished truth, obtained DIRECTLY from as many prinicpal people involved in the story as is humanly possible. It would have been easier to simplify the story into heroes vs. villians, but Ms. Skloot deftly handles all sides of the story.
For some detail: I have worked with HeLa cells in the past, but did not know even the barest information about the story of Henrietta Lacks until a few years ago. It simply was not common knowledge, until a few less ethical folks released her name and medical records to the public. This obviously should not have been done without the express permission of the Lacks family, which Ms. Skloot obtained. In the past, others have not been as ethical. The book covers Ms. Lacks' early life, how her cells came to be harvested, and what happened to both the cells and her family afterward.
The contributions of HeLa cells to science are absolutely staggering and cannot be over-stated. The sections where the science was described were clear and accurate. With the story of Ms. Lacks' family interwoven, this book was fairly close to perfect. I found myself moved to tears several times because of the fate of the Lacks family and Henrietta's daughter's indomitable spirit. I do not think anyone but Ms. Skloot could have written this book. She worked with the family for over a decade in order to get the story right. This was critical, as the family had been wronged too many times in the past.
Thank you for this astounding work of art. I will be donating to the Henrietta Lacks foundation in honor of the entire family, and I hope many others will read the book and be similarly moved.