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#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”— Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” ( LITHUB ), AND “BEST” ( THE PHILADELPHIA INQUIRER ) BOOKS OF THE DECADE • ONE OF ESSENCE ’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION • A KIRKUS REVIEWS BEST NONFICTION BOOK OF THE CENTURY A BEST BOOK OF THE YEAR: The New York Times Book Review, Entertainment Weekly, O: The Oprah Magazine, NPR, Financial Times, New York, Independent (U.K.), Times (U.K.), Publishers Weekly, Library Journal, Kirkus Reviews, Booklist, Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.




| Dimensions | 5.14 x 1.07 x 7.94 inches |
| Edition | Reprint |
| Isbn 10 | 1400052181 |
| Item Weight | 2.31 pounds |
| Language | English |
| Print Length | 381 pages |
| Publication Date | March 8, 2011 |
| Publisher | Crown |
User
wanted to make an immortal cell line that didn’t die like the rest
The book The Immortal Life of Henrietta Lacks by Rebecca Skloot is about the life, death, and family life of a woman named Henrietta. When she turned 30 she developed an aggressive form cervical cancer and received treatment at John Hopkins hospital. However as they were treating her the doctor took a slice of her tumor and put it into a tube for testing. They did this with a lot of people back then all without patient consent. The doctor, specifically Gey Gardener, wanted to make an immortal cell line that didn’t die like the rest. Usually a day or two after they took the sample, it died. However Henrietta’s cells lived and continued to grow in as much space and they gave it. Though thought of as a fluke at first, her cells continue to divide to this day and is used in almost every laboratory. Because of their widespread nature, it is amazing how not many people know about the woman behind the cells. This is why the author decided to write this book. While the topic alone is amazing, the author made it even better by making the book easy to understand, exploring the ethics of the doctor patient relationship, and incorporating Henrietta’s family.The easy to understand language is what makes the book available to such a wide audience. Whenever a science term or event was refereed to instead of requiring the reader to have prior knowledge everything was explained. At times it seemed that things were explained in too much detail but this is so that anyone can read it and understand. In book of this sort, usually a lot of terms are thrown around but that is not the case in this one. There were some times that things could have been left out because they involved basic information but she also included it so that people like Henrietta’s descendants, who had little to no formal education, could read it. By no means was this a strictly scientific book, in fact one of its other strong points was the human element.The author is in fact a character in this story. In order to write this story she had to get know the family of Henrietta which was not very easy. At one point she was calling Henrietta’s daughter every day just for the story. She got stood up in hotels, hung up on, and criticized but she stayed on the story. Because of that she got really close to Henrietta’s daughter Deborah. Her and Deborah formed a true bond and the author stayed with her even through panic attacks, health issues, bouts of extreme paranoia, and her eventual death. There was a very clear human element that pulled at heartstring that didn’t just stem from the author getting to know the family but from her researching and finding the small things. Some of these times include when Henrietta was dying. Instead of just saying that she died the author went in detail and included a really small but meaningful piece on page 81. “And everyone I talked to who might know said that Gey and Henrietta never met. Everyone, that is, except Laure Aurelian, a microbiologist who was Geys colleague at Hopkins. I’ll never forget it, Aurelian said. George told me he leaned over Henrietta’s bed and said, Your cells will make you immortal. He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone.” (81). That tiny moment said represented was so beautifully tragic and added a whole new level to the book.Another part that was really special about the book was the moral and ethical dilemmas. Henrietta’s cells were taken without her knowledge or permission. “No one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix” (39). The author makes a point of acknowledging that back then patients and doctors had a very strained relationship. Doctors would often experiment on their patient without permission. But also doctors weren’t required to tell the patient everything that was going on with them. There was one instant that the author pointed out a case where a man, Moore, had cancer and his doctor Golde, treated him but removed his spleen. But then the doctor started asking for numerous follow up appointments and went as far as paying for his plane ticket from the other side of the country to come see him until Moore figured out something fishy was going on. Moore found out that Golde was engineering a cell line from his cells because they produced a hard to come by protein. When Moore tried to sue he lost because Golde patented it and there was a ruling that once cells leave a patient's body, they are no longer their own. The only difference between this case and Henrietta’s was that the man was educated enough to fight this and even when the ruling was not in his favor he could make sure the doctor couldn’t take any more of his cells. The author also showed another example of the ethics of the medical practice. There was a case where a man went in for what he thought was a standard procedure but when he woke up he was paralysed from the waist down. He had no idea the risks of the procedure which could have influenced his decision of whether to get it or pursue another method of treatment.Overall the books way of being empathetic, easy to understand, and tackling the moral and ethical nuances of the medical practice is what made it so good. Through every page I felt immersed in the story and the breakup of the chapters were masterful. I really enjoyed how the book was divided into chapter that jumped back and from when Henrietta’s childhood and when she got her diagnosis to her death and the author trying to find out more about her. It reads like a research novel. While it wasn’t as plot driven as a novel it wasn’t as analytical and clinical as a textbook. It was also more human and less persuasive than a newspaper article. I liked the way the author organised it because it guaranteed that something was always happening which is why the author organized it that way. It made it really interesting and informative. It also brought out themes of lack of health care for colored people in the 50’s, the spiritual belief of the link between body and soul, and the poverty that still exists today. I expected this book to be very clinical focus only on how the cells were used but I was pleasantly surprised. By the end of the book, the author reached the conclusion that Henrietta should be known and that her family should be either cared for or compensated for the distribution of their mother’s cells. The book as a whole goes very logically from start to finish and comes together very sadly but oddly satisfyingly with the death of Deborah and shows that the whole Lacks family had hard lives.
User
Biomedical Research and Bioethics: An excellent, eye-opening, provocative book
During the 20th century the lifespan of humans has increased significantly due, mainly, to advances in biomedical research. Over the years there has been an ongoing debate over ethical norms for the conduct of biomedical research; increasingly tissue rights activists, ethicists, lawyers, doctors and patients are insisting on the clarification of ethical norms, and the clarification/enforcement of ethical standards so as to promote moral/social values, et al. Specifically, for example, bioethical standards require that the participation of human subjects in biomedical research experiments be on a voluntary basis and that subjects be informed of the risks associated with the research. In the book titled, "The Immortal Life of Henrietta Lacks", Skloot reveals that despite the many major benefits afforded society by biomedical research, there have been a number of shocking cases throughout history wherein bioethical standards have been violated; the revelation of each such case refuels the debate over bioethical norms, and increases the demand for the definition and enforcement of bioethical standards.This biographical/bioethical book by Skloot (who earned a degree in biology before gravitating towards writing) really tells two stories in one: (1) it re-creates the life of Henrietta Lacks, herself, with the help of her family (mainly, her daughter Deborah), friends and neighbors; and (2) it relates the story of Henrietta Lacks' `immortal cells (aka, HeLa). Henrietta Lacks was an African American woman who was raised in the segregated south during the first half of the 20th century. In 1951 she was treated for cervical cancer in the ward for "colored" women at the Johns Hopkins Hospital in Baltimore, Maryland. During her surgery the doctors harvested samples of both her cancer cells and her healthy cells, without her knowledge or consent, to be used for medical research. (According to Skloot, during the Jim Crow era doctors often used patients from the public wards---all of whom were poor, and most of whom happened to be black---for research without their knowledge; this practice supposedly was a form of repayment for `free' medical services.). In the laboratory, as expected, the healthy cells died after a relatively short period of time. However, miraculously, the cancer cells survived and continued to grow at an astonishing rate. This represented a breakthrough in medical research; up until that time, all cells (healthy or cancerous) would die out in cell culture. Although Henrietta Lacks eventually died from her cancer in 1951, her cells (subsequently named HeLa cells) have become `immortal'.HeLa cells are mass produced for commercial use and have launched a multi-billion dollar industry. HeLa cells have facilitated most of the medical research advances since the 1950s, related to such diseases as polio, cancer, hemophilia, AIDS, etc. Skloot states, "Like guinea pigs and mice, Henrietta's cells have become the standard workhorse". Notwithstanding the success of biomedical research derived from HeLa cells, for decades following Henrietta Lacks' death her family members were not informed about their existence or their enormous contribution to the field of medicine. Moreover, none of the large profits reaped from the commercial use of HeLa cells have reached the Lacks family. According to Skloot, HeLa cells represent one of the greatest biomedical discoveries of the 20th century; yet, despite the enormous benefits that they have afforded society, their use remains shrouded in controversy.Skloot infers that, while it would have been considered unethical (in terms of today's ethics code) for doctors to take Henrietta Lacks' cells without her informed consent, it was not illegal. Notwithstanding, I was surprised to learn that even as of the time when this book went to press (2009) it was still not illegal for doctors to take a person's cells without his/her knowledge.What about the case wherein a doctor takes a person's tissue with the patient's informed consent, and then stores this tissue to be used later for research purposes; is this legal and/or ethical? According to Skloot, if the doctor intends to gather tissue specifically for research purposes, (s)he is legally required to obtain the patient's informed consent. However, if the doctor stores tissue obtained during diagnostic procedures (e.g., the removal of a mole, et al) this is not illegal and, indeed, is a common occurrence. In fact, most Americans (of all races) currently have their tissue (e.g., moles, appendices, ovaries, fat, placentas, blood, et al.) stored on file somewhere. Moreover, according to Skloot, since the late sixties, it is mandatory for blood samples to be taken from most infants born in the United States to facilitate screening of newborns for genetic diseases. And, even though the Federal Policy for the Protection of Human Subjects requires informed consent for all human-subject research, most of this research isn't covered by this regulation because it is not federally funded, etc. In fact, according to Skloot, most of the aforementioned stored human tissue is, indeed, available to support tissue research on a massive and growing scale. While human tissue research is indispensible to making diagnostic/therapeutic medical advances (e.g., tests for various diseases, sundry vaccines, various prescription drugs, etc.) which greatly benefit society, it raises the `ethical' question as to whether the original donors are entitled to share in the huge profits derived from the commercialization of their tissues, and research derived from their tissues. Do donors own their tissue once it has been removed from their bodies? The debate over the commercialization of human biological material is likely to go on as long as we are a market-driven society.Biomedical research has afforded society longer lives and improved health; and it has reduced the cost of illness. Despite these major benefits, according to Skloot, there have been a number of shocking cases in history wherein bioethical standards have been violated. One of the most shocking cases is that of Henrietta Lacks, whose cells were harvested without her knowledge, and have since been commercialized for large profits, while her family has not been allowed to share in these profits. The revelation of Henrietta Lacks' case, via Skloot's excellent book, is likely to refuel the debate over bioethical norms, and to increase the demand (by tissue rights activists, ethicists, lawyers, doctors and patients) for the definition, clarification, and enforcement of bioethical standards.Clearly, the demand for medical research is likely to continue into the foreseeable future. There are so many diseases/maladies that are yet to be conquered, such as Alzheimer's disease, cancer, HIV/AIDS, Parkinson's, diabetes, mental disorders, stroke, heart disease, arthritis, and other intractable diseases; society stands to benefit greatly from the conquest of these diseases/maladies. At the same time, it is critical that human tissue research be conducted in a socially responsible manner; a public discussion of the ethical, legal, and social implications of biomedical research is sorely needed."The Immortal Life of Henrietta Lacks" is an excellent, eye-opening, provocative book. Skloot manages to make a technical subject read like a thriller. Her presentation of the key issues related to biomedical research using human tissues is both effective and persuasive. The book is well-referenced and has been intensely fact-checked. I think that everyone should read this book at least once.
User
A Really Interesting Read - Definitely Worth It
The Immortal Life of Henrietta Lacks is a really strange, but intriguing story.Henrietta Lacks was a black woman who died of a particularly virulent case of cervical cancer in 1951. Without her knowledge or consent, the doctors treating her took a sample of her cancer cells. Those cells became "immortal" - meaning they are capable of growing in labs forever, assuming they receive the proper care. The cells are named "HeLa" (HEnrietta LAcks) and have played a vital role in curing polio, conducting genetic mapping, experimenting with cloning, and so much more. The strangest part? It's all true.Skloot weaves together a number of stories in her book:- Henrietta's life and death- The development and impact of the HeLa cells- The Lacks family's struggle to understand their mother and her role in medical history- Skloot's relationship with the Lacks' family, especially Henrietta's daughter DeborahUltimately, although the book is centered around Henrietta and her cells, it's really about Deborah and her deep need to understand her who her mother was - both as a person and as a scientific contributor. What started out as Skloot doing due diligence as a researcher, led to a real relationship with Deborah and Deborah eventually takes over the story from her mother. This may have been because Henrietta's life story is actually pretty short, despite the HeLa cells' immortality. But I also think it's because Deborah had a real philosophical and moral dilemma on her hands - what is her family owed because of Henrietta's unknowing contribution to science? Or are they owed anything at all?The story does end a little abruptly, but I chalk this up to the fact that Henrietta's story isn't really finished. HeLa cells are still being used around the world for research and they'll probably continued to be used for a long time. And all of the ethical questions raised by the very existence of the HeLa cells will not be resolved any time soon. This book is designed to make you think more than to present you with a complete story.This book got a ton of hype over the last year or so and after finishing it, it's easy to see why. The story is pretty incredible, plus the writing is strong. Despite including a lot of medical and technical terms, history, and theory, it's easy to follow and understand. The story pulls together a number of sticky and complicated aspects of American society that we're still trying to work out - the power of the medical and scientific communities, the common assumption that doctors know best, the blurriness of medical ethics, racism and classism. Deborah's quest to better understand her mother brings a really important human element to the book, which grounds all the medical talk and reminds you that the research done on HeLa impacts real people.In a nutshell: An intriguing story that will make you scratch your head and say "This really happened?" Turns out it did and it's worth reading about. Three and a half stars.
User
50% Biography + 50% Science = 100% Fascinating
This book is 50% biography and 50% science; and it adds up to 100% fascinating. Wow - I couldn't put it down!I have worked with HeLa cells many times during my career in microbiology, and I've always wondered about the woman from whom they originated. I was always very much aware that behind every one of the medical tests I performed lay a real person whose life might depend on the accuracy and insight of my work. I wanted to know as much as possible about that person, both to keep my focus on the real reason for the work I was doing, and to gain insight that might contribute to the patient's diagnosis and treatment.And although I knew that "HeLa" had died in 1951, I felt the same way about working with the cells from her malignant cervical tumor. I wanted to know more about her, to always be aware of and empathetic to the real person and her suffering. But I graduated before Rebecca Skloots did, at a time when even less was known about "HeLa." I didn't know Henrietta Lacks' name, that she was African-American, her age when she died, or how long she was ill; and I had never seen the photo of her that is now so famous. I wondered whether she had any children, and what became of them when she died.So I was thrilled when this book came out, and it has been on my "priority tbr" list since I first heard of it. It lived up to, and even exceeded, my expectations. It answered all my questions, and brought up many new ones, the answers to some of which may never be known.Henrietta's life was a hard one. She lost her own mother at the age of four and was raised by her grandparents. Life for her was an endless struggle against poverty. But one thing she did have was a large and close-knit extended family. Even without a mother, she learned well the arts of caring and nurturing; and all of her adult life she fed and took in other family members who needed help. She married a cousin with whom she'd grown up, and they had five children. There doesn't seem to be so much as a hint of a rumor that she ever had any other lover in all her life. But life was unfair to Henrietta. Her husband was a notorious philanderer, with the result that she was constantly plagued by sexually transmitted diseases. One of them - HPV - gave her cervical cancer and was also the reason for her cells' immortality. (Normal cells live for only about 50 divisions, then die. But the HeLa cells cultured from Henrietta's tumor are still living and reproducing sixty years later, and that is what makes them so valuable to science.) Henrietta had three venereal diseases at the same time during her cancer treatments. Her cancer was incredibly aggressive, and she died after months of terrible agony. One can only hope that her spirit survives somewhere to know that the tragedy of her life was given meaning by her contribution to medical science - arguably the most important in the history of medicine.The story of Henrietta's older daughter Elsie is even more heartbreaking. She was born deaf, mute, epileptic, and perhaps retarded due to congenital syphilis (meaning she contracted it in her mother's womb. All 5 of the Lacks children suffered neural hearing disabilities from the same cause.) At least one family member believes that Elsie may not have been retarded at all, but was simply unable to communicate due to her deafness. No matter what her IQ might have been, her story is utterly horrifying. A photo of Elsie from when she still lived at home shows her to be a strikingly beautiful child; and also clean, healthy, and happy. But when Henrietta became so ill, she could no longer care for her daughter and Elsie was institutionalized. What happened to the 11-year-old girl in the Crownsville State Hospital for the Negro Insane is so shocking and awful that it's almost unbelievable. This part of the book is very difficult to read, but it's important that people know - both to honor Elsie's memory, and to make sure that such things do not happen again.Henrietta died before her younger daughter Deborah was old enough to remember her, and Deborah was to spend the rest of her life longing for information about her mother and sister, trying to forge some kind of connection with her lost ones. Deborah's help and commitment to finding the truth was vital in the writing of this book.Sloot comes across as sincere and as having developed a genuine and lasting bond with Henrietta's family, rather than as simply a dispassionate and objective reporter. This was instrumental to her research, as the family had been "burned" several times by unscrupulous characters who only wanted to cash in on the story for their own profit. It made the Lacks family defensive and ultra cautious. Before Skloot could even begin writing the book, she first had to win their trust. And she does seem to have honored that, by setting up a scholarship trust fund for the education of Henrietta's descendants and donating a portion of the book's profits to it. Another, indirect, result of this book is the donation of tombstones for Henrietta's and her daughter Elsie's previously unmarked graves.The information given in the book about the ways in which Henrietta's cells have contributed to science and helped other people is fascinating and amazing! Without HeLa, the polio vaccine and the most effective cancer medications wouldn't exist; nor could the HIV virus have been identified. And these are just the beginning: the list goes on and on.The book concludes with a thorough discussion of the ethics of medical research on human tissues. Henrietta's sons have a strong sense of injustice that their mother's cells were taken without her knowledge or permission, and that so many people have made vast amounts of money off of them while her children cannot afford basic medical care. And who can blame them? They do have a point. Patient privacy is another problem that arises when working with human cells, especially now that their DNA can be fingerprinted. Skloot interviews many experts with widely varying opinions about these issues, and shows us how extremely complex the matter is, with no easy answers.The book includes some great photos. And if you go to the author's website, you can see many more photos, including some of the ones described but not included in the book. [...]My one criticism of this book was that it left some questions unanswered that probably could have been answered. Especially - and this one's driving me crazy - what were the caged creatures that frightened Margaret Lacks so, when she got lost in the basement of Johns Hopkins Hospital - the "man-sized rabbits"? (I'm guessing kangaroos.) Also, why were Henrietta's children allowed to be born with damage from congenital syphilis? Why wasn't Henrietta treated for it? Her first two kids (including Elsie) were born at home, so she probably didn't have access to professional medical care at that time. But the others were born in hospitals. Was it that she didn't have any prenatal care, so that by the time she was in labor it was too late? Or that the effective penicillin treatment wasn't commonly available yet? Was it available but not given to indigent black patients?I also noticed that Skloots uses the inaccurate term "hereditary syphilis" rather than the correct "congenital syphilis." But given the extensive amount of research she did (the book took 10 years to write) I suspect that was a deliberate choice rather than an error. Skloots may have felt that readers without a scientific background would better understand the word "hereditary". Actually "hereditary" refers to features that are inherited by way of genes; "congenital" simply means that a person is born with some condition, and it may or may not be hereditary. Syphilis is not a genetic disease, but one that comes from being infected by the microorganism. In congenital syphilis, the fetus is infected while in the womb and the disease has already caused permanent damage by the time the baby is born.Further evidence of the massive research project undertaken by Ms. Skloots can be seen in the appendices. The "Acknowledgments" section is actually interesting to read, as it gives further information about members of the Lacks family and their story. And beware when reading the "Notes" section - as well as thousands of technical scientific articles, it describes hundreds of interesting-sounding books for further reading that might threaten to overwhelm your tbr list!Oprah Winfrey and Alan Ball are working together on producing a movie based on The Immortal Life on Henrietta Lacks. Thanks to this book, Henrietta and her family are finally getting the recognition they deserve. On the inside back of the book jacket, there is a website address given where you can donate to the foundation for the education of Henrietta's descendants. I hope that everyone who reads the book will do that, even if they can only afford a small contribution. [...](358 pages)
User
Biology, Ethics, and A Great Narrative
I'm really not sure what took my so long to read Rebecca Skloot's The Immortal Life of Henrietta Lacks, but I'm thrilled that I finally have. For me this book married two of my most favorite things: biology and narrative (it is a true story, but it reads with the fluidity of a novel). Skloot traces the famous HeLa cells ("immortal" cells from patient Henrietta Lacks that have been used to study countless diseases and create many cures) back to their origins, investigating the treatment of the original patient and those connected to her since then. The research the cells have allowed has prompted developments as essential as the polio vaccine, cloning, and gene mapping- they've directly and indirectly saved many lives. The resounding ethical question: was it right for doctors to take her cells without permission?StructureSkloot structures this text so that the reader is constantly being moved from Henrietta Lack's past to the author's investigation in the present. As we're finding out about Lacks and her illness, death, and the usage of her cells, we're also learning about her family and how the exploitation of her cells have impacted their lives. This book is an incredibly quick read, in part due to the overall flow.The three sections of the book are entitled "Life, "Death," and "Immortality," which parallel Lacks' existence. This process is also something that her surviving family members must deal with as well; coping with loss is difficult, but not being able to obtain true closure complicates matters even more.Narrative StyleI just spent a few minutes looking at the negative reviews of this book and was amused to see many say that Skloot has a "liberal agenda" and is "self-serving." While you can absolutely detect liberal undertones (she does think that the family should be recognized, which would therefore be a stab at the pharmaceutical industry... ie big business), I thought she did an admirable job of leaving herself out of the text. We have no idea what her personal life is like, what she likes to do during her time off, or how devoting so much time impacted her finances (I often wondered). Skloot's tone is straightforward but dimpled with humor and wit. Her research efforts must be applauded as well. As Skloot begins to include Lack's daughter, Deborah, the book becomes a little more sentimental and personal, but without taking away from the overall purpose of the investigation.EthicsThe ethical implication behind Henrietta Lacks' story are incredible. She was a poor, black woman with STDs and cancer in the 1950s- there was absolutely no regard whatsoever for patient choice. Researchers took her cells and once it was determined that they rapidly replicated they were eventually sold to labs around the world, the Lacks family seeing none of the profit, adding to the dilemma. Race compounds the issue, Skloot adding in additional research on other controversial policies during the time period. While legislation offers more protection now, what does that mean for the Lacks family? Is it okay for doctors to make exceptions to help thousands of others and advance medical science? How should patients be compensated when their medical records are used and generate profit? And who pays whom? It's a really complicated, emotionally charged debate that's simultaneously fascinating and mind-boggling.ScienceMy biggest warning about this book- don't shy away from it because it so heavily deals with science. Skloot does a great job explaining everything from the basic structure of a cell, to replication, and sample contamination. I do think some diagrams would have added to the text as a whole, though.Highly RecommendedI absolutely recommend this book- you will learn without feeling lectured. Besides being educational, it raises some great ethical questions (which is why so many book clubs have read it).
User
How one woman's cells helped cure polio and sparked major issues in medical ethics
In 1951 a woman died in Johns Hopkins Hospital in Baltimore of cervical cancer. The cancer had been "particularly virulent", and though she was treated with the latest protocols for cervical cancer, she never had much of a chance. A surgeon at Hopkins took samples of her tumor and put the cells in a petri dish for researchers trying to cultivate human cells in the laboratory. These cells grew and reproduced as no other before and few since had done and they have been used by researchers ever since. They came along just in time to provide the medium for testing the first polio vaccine and have been "workhorse" cells ever since, used in research on herpes, leukemia, influenza, hemophilia, Parkinson's, lactose intolerance, sexually transmitted diseases , and much more--even the effect on human cells of working in sewers.The woman was Henrietta Lacks. She was black and poor, the descendent of slaves and sharecroppers who grew tobacco in Maryland and Virginia. Her cells, according to conventions of the time, were called HeLa (first two letters of first and last name). The researchers at Hopkins shared the cells with colleagues at other institutions and those researchers shared or sold them further. They survived just fine sent in the mail it was discovered. Soon HeLa cells were used all over the world and far more HeLa cells existed than Henrietta Lacks had ever had. It was years before the discovery that her tumor was HPV, the fast growing cervical cancer which young girls are advised to get a vaccine for now, and that that accounted for their "immortality".Rebecca Skloot heard this story in a college class and found a passion as she attempted to understand how it happened that so much medical research depended on the cells of a single woman but also who this woman was, how she had lived and what descendents she had left. She was not the first researcher interested in HeLa and the woman who was the tissue donor--though of course "donor" is probably not the correct term since Henrietta Lacks was never consulted. And many of those who wrote about HeLa also tried to find Henrietta's family with the result that the Lacks, who grew up on stories of the Tuskegee Institute syphilis research[1] and rumors that Hopkins--founded as a charity hospital-- kidnapped black people at night and subjected them to hideous medical experiments, suspected on the one hand that Henrietta might have been tortured or even killed and on the other resented the fact that others had made money off her cells and they had got nothing. So they either refused to talk to reporters or researchers or they ranted about the commercialization of their relative's cells which had benefitted everyone but them.Rebecca set her sights on Deborah Lacks, Henrietta's daughter, and spent 10 years getting to know her and the family Henrietta had left and attempting to help them get recognition for a relative who had provided so much to medical science. The result is a fascinating book in which Skloot tells the story of the Lacks family as well as the story of the HeLa cells and their role in medical research and the evolving medical ethics story surrounding the use of human tissue in research. The relationship Skloot developed with the Lacks was extraordinary: she overcame endless suspicions of white people, reporters, researchers, profiteers, etc. to become a real friend to Deborah and her family. She tells their story in their own voices--and clearly it was not easy to both explain their ideas and feelings and clearly communicate their values to the audience, nor was it easy to gain their trust and cooperation. I can't imagine many writers going to the lengths Skloot went to get a story that nevertheless honors and doesn't exploit those whose story it is. Winning over the Lacks klan required more than most writers would be willing to give of themselves.In addition Skloot provides lively and engaging narrative, full of interesting personalities, that results from her extensive research on the use of human cells in medical research and the ethical issues surrounding that use. I couldn't put the book down--and before reading this I'd never have said I was very interested in either cell research or medical ethics.Most readers will probably be surprised to learn that while medical ethics, especially protecting the privacy of patents has come a long way since Henrietta Lacks' cells first appeared on the scene, it is still not illegal for human tissue to be used without the informed consent of the patient. It's an ongoing debate on which Skloot presents a variety of positions so that the readers understand the complexity of the issues involved.For a nonfiction book on a significant current topic, this one can't be beat. It's a page turner, full of human interest but never at the expense of the facts or the issues.[1] The Tuskegee Syphilis Study is one of the most horrendous examples of research carried out in disregard of basic ethical principles of conduct. The publicity surrounding the study was one of the major influences leading to the codification of protection for human subjects. [From the Tuskegee Institute website, [...]
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Appealing to a Variety of Readers
The Immortal Life of Henriette Lacks is a book I don't even think I'd have heard of if not for my friend, and it certainly is not one I would have read. It is fundamentally a - dare I say the word - science book. It is the story of HeLa cells - where they came from, how they were reproduced and how they were used to create the vaccine that has essentially eradicated polio, among other biomedical advances. But it is also the story of Henrietta Lacks the source of the cells which have now become the immortal HeLa line. Even more so, it is the story of Henrietta's children who lost their mother to an aggressive form of cervical cancer when she was only 31 years old.The Immortal Life of Henriette Lacks is the biomedical story of cell reproduction and research and the ethical questions that arise. However, if it had been that story alone, I would not considered it defining, and indeed it has become one of those books I will use as a marker for delineating when my views on medical research and ethics became my own and not simply ones that were passed on to me. Many views will forever be referred to as "pre-Henrietta Lacks" and "post-Henrietta Lacks." It has also become the book that has educated me on early cancer treatment, however rudimentary, and how far we have come in the last 60 years. And yet, it is more. It is the story of what happens to children who are left without a mother, children who struggled to understand who their mother was, children who did not know of their mother's contribution until decades later, children who struggled to understand what exactly that contribution was. These events, along with many others, shaped who Henrietta Lacks's children and grandchildren became, and it is their story, as much as Henrietta's.Rebecca Skloot's writing style also enhanced a book that was part science and part family chronicle. Her point of view was her own, that of an outsider to the Lacks family, and while objective, it was descriptive when description was required. Although certainly not a piece of local color writing, she did create a sense of people and places. One of the first lines I highlighted was about her decision to maintain dialect after being told by one of Henrietta's relatives, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves." By taking that advice, I whole-heartedly believe while telling a delicate story she preserved her own integrity and that of the Lacks family.This book would appeal not only to those who enjoy reading about medical research and ethics, but also to those who are interested in exploring how these issue affect individual people and their families.
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IT'S ABOUT HUMAN CELLS...READ IT ANYWAY
Rebecca Skloot has written a fascinating account about the gathering and utilization of human cells for medical research. It has achieved widespread acclaim for its appeal in both the scientific and lay communities. But there's much more. This book is also an ode to friendship, even love, as Skloot gathers together a wildly unbalanced family in an attempt to calm their cynical minds.THE IMMORTAL LIFE OF HENRIETTA LACKS has been a runaway best seller since it was first published in 2010. It's amazing that a complicated topic would have such universal appeal. But give the author credit for taking a complex scientific subject, simplifying it, and infusing it with human interest, making the reader feel intelligent while still being entertained. It's a detective story with a technical background featuring real people you care about.One can imagine the emotion of having parts of a dead family member, in this case a mother, divided and spread around the world for purposes not fully understood. What parts are being used? What are they being used for? And what does it mean when you are told your beloved will live forever when you know she's dead? Although you might not accept the answers, being well educated might make them easier to grasp. But being totally ignorant about human cells, their study and usage, and medical procedures and their consequences, having a dead mother involved would surely cause great angst to most of us. Add the constant badgering of a notoriously ill mannered and prying news media and one can appreciate the torment to the remaining members of the Lacks family.We meet Deborah Lacks, Henrietta's daughter. She is troubled and vehemently opposed to further discussions of her mother's death and subsequent cell distribution. The rest of the family point to her as the final hurdle Skloot must overcome to get information about Henrietta's turbulent life. But she's not talking. Skloot's accounts of the gradual steps she must take to gain Deborah's cooperation are touching and brilliantly presented. The remaining family members reluctantly follow along.There is continuing scientific debate about the virulence of Henrietta Lacks's cells, or HeLa, as they are commonly known. They have powerful growth qualities and are eternal when most others don't even survive first cultivation. Her family had many ideas about that, mostly based on supposition or superstition. Some thought it was God's punishment for various transgressions by Henrietta. Others thought it was God's punishment for Adam's eating of Eve's apple or, perhaps, disease-causing spirits that hovered over Henrietta. One thought it possible that something alive had crawled into Henrietta, killed her, and kept on living. One thing was for sure. None of them knew what was happening to Henrietta either before or after her death. This created the anger and distrust that Rebecca Skloot was battling against to get her story together.The living relatives had much to distrust when it came to science, not the least being an inherent fear of any scientific experimentation with black people based on past experiences being widely publicized at the time. And there was the idea that a lot of money was being made with Henrietta's body parts, and the family members, who desperately needed financial assistance, were not getting one dime of it.Skloot tackles all these perplexing situations in an analytical and nonjudgmental manner. She is the embodiment of an investigative journalist; probing, indefatigable, brave. She is also a talented writer, but there is more than that about her. She gets intensely involved with Henrietta Lacks's survivors and her honesty and genuine affinity with their plight gains their reluctant cooperation. It took her ten years to do that.I was amazed at the depth of research in the book, the beauty and simplicity of the writing, and the importance of the subject. I believe this book deserves the highest prize for literature and that Rebecca Skloot's debut effort is nothing short of sheer genius.Schuyler T WallaceAuthor of TIN LIZARD TALES
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Buena compra
Muy buen producto, llego en buen estado y buenas condiciones
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Absolutamente fenomenal
Livro fantástico, vale muito a pena.
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livre incroyable
Ce livre a tout pour lui; un histoire passionnant, incroyable et véridique, très bien écrit, il se lit comme un polar, mais en même temps c'est une biographie, et une histoire de la science. A lire pour le côté humain, le côté scientifique, et pour le suspense!A mettre entre toutes les mains.
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Nicht das was man erwartet
Wer irgendwo im Biologie- oder Medizinstudium mit menschlichen Zellen arbeitet, der hat mit großer Wahrscheinlichkeit mit den Zellen von Henrietta Lacks gearbeitet. Diese Zellen - die als HeLa bekannt sind, werden seit den 50er Jahren für so ziemlich jede Forschung an Zellen verwendet und haben u.a. Wirkstoffen gegen Polio oder AIDS ermöglicht.Als ich davon gehört habe, war ich sofort interessiert, mehr über diese Zellen zu erfahren. Dieses Buch redet über die Zellen - aber das ist nicht der Schwerpunkt des Buches.Es geht hier um die Frau hinter den Zellen und das war keine Wissenschaftlerin, sondern eine arme, schwarze Frau, die Anfang der 50er Jahre an Gebärmutterhalskrebs starb. Entsprechend erfährt man sehr viel über das Leben der Schwarzen damals wie heute - die Familie der Gestorbenen ist nach wie vor sehr arm. Man lernt wie sich das Patienten- und Ärztebild in den letzten Jahren verändert hat und es geht um ethische Fragen, wie z.B. wem Körperzellen eigentlich gehören, die für Untersuchunge genommen werden und was dafür oder dagegen spricht, dass Patienten an etwaigen Gewinnen beteiligt werden, wenn die Gewinne auf deren Körperzellen basieren.Doch der Schwerpunkt liegt klar auf das Leben (und Leiden) der armen und schwarzen Bevölkerung der letzten 60 Jahre. Und das macht das Buch sehr beeindruckend und fesselnd. Skloot deckt alles ab, was man bei dem Thema erwartet (s.o.) und das macht sie gut. Ich kann das Buch eigentlich nur jedem empfehlen, auch wenn er keinen Hintergrund in Biologie oder Medizin hat (habe ich im Übrigen auch nicht).
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Just get this book. It should be taught in schools!
Rebecca Skloot’s 'The Immortal Life of Henrietta Lacks' is a tour de force in non-fiction writing, a book that resonates on multiple levels, from the personal to the universal. Skloot's subject-led narrative exemplifies excellence, weaving together the threads of science, ethics, and humanity in a way that is both compelling and deeply moving.This book is not merely a historical account; it is an immersive experience. Skloot's meticulous research and evocative prose bring the story to life, allowing readers to feel the palpable anger of the Lacks family, taste the food shared around their table, and sense the profound injustices they faced. The legacy of Jim Crow laws, both in the past and their echoes in modern legislation, is starkly portrayed, evoking a sense of shame and a call to reflection for the continued racial inequalities.Henrietta Lacks' cells, taken without her knowledge or consent, became one of the most important tools in medicine, leading to numerous breakthroughs and treatments. The irony, as Skloot deftly highlights, is heart-wrenching: while Lacks' cells have helped cure countless diseases worldwide, her own descendants struggle with preventable diseases within the confines of a flawed United States healthcare system. This juxtaposition underscores the multifaceted nature of the book; it is not just about black versus white, but about systemic inequality and the complex interplay of race, class, and ethics in medical research.Skloot also delves into the humanity and forgiveness of the Lacks family, which shines through despite their suffering. Their story is a testament to resilience and the enduring human spirit. It is a reminder that beyond the scientific achievements and ethical debates, there are real people whose lives and legacies are at stake.A particularly moving part of the book is when Rebecca Skloot revisits Clover, Virginia, Henrietta Lacks' hometown. Clover, once a bustling town of black workers engaged in agriculture and industry, had dramatically declined by the time of Skloot’s first visit in the late 1980s. I openly wept when Skloot described her later visit; the town was dilapidated and falling apart, a poignant symbol of the slow death of a once-thriving community. The goosebump moment was when she returned to speak to some of the townspeople, finding nothing left of the town apart from the decaying crags of the foundations of the high street. This haunting image amplifies the book's themes of loss and the passage of time.What stands out in this narrative is the portrayal of human ingenuity and its capacity for both harm and healing. Henrietta Lacks, a woman who unknowingly changed the course of medical history, deserves recognition and honour. A statue of her beside the one of Jesus at Johns Hopkins Hospital would be a fitting tribute to her unwitting contributions to humanity.'The Immortal Life of Henrietta Lacks' is more than just a book; it is a powerful narrative that challenges us to think deeply about the intersections of race, science, and ethics. It is a story of exploitation and resilience, injustice and forgiveness, making it a must-read for anyone interested in the complexities of medical history and the enduring impact of one woman’s legacy.
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