The Immortal Life of Henrietta Lacks

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? Structure Skloot 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 Style I 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. Ethics The 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. Science My 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 Recommended I 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).

I was so moved by this book. Henrietta's story, the agonizing decisions and pains Henrietta was forced to endure, the incredible medical advancements she enabled, the risks Henrietta's family took to help Ms. Skloot to tell the story, the author's careful consideration for Henrietta's family--I cannot overstate what an impact all of this made on me. I am not medical professional--just a mom of and advocate for medically fragile kiddos--but in my 40 years of life I had never heard of Henrietta Lacks. A friend rec'd this book to me last month, and once I started reading I couldn't stop. I applaud Ms. Skloot for her compassion for the Lacks family and her determination to share their story as completely as possible. They are an imperfect but beautiful family, and I am grateful to have gotten to "know" them through this book. This is also a fascinating snapshot of the state of ethics and understandable lack of informed consent in our country in 1951. The author does a very good job of explaining how and why Drs. Gey & Jones made the decisions they made when it came to their patient, Henrietta, while also illustrating the ethical implications of their decisions, how much we've learned since then, and exactly why we've changed our standards and practices to be fair and transparent to patients, their families, and to the public. Chapter 13 "The HeLa Factory" resonated with me in particular--so much logic, reason, common sense, and public health operations/obligations everywhere, but the dehumanization of Henrietta was painful to watch. I am excited to report that my real life doctors know of HeLa! I was so thrilled when they acknowledged they knew what I was talking about! But they usually do not know WHO I am talking about. I find Henrietta's story, as told by Ms. Skloot and Deborah, so overwhelming, tragic, and exciting that I talk to all of our doctors about her! They all seem to know HeLa (!!!), but nobody seems to know Henrietta. I am always excited to share what I know of her story and am so thankful this book was written. Thank you to Ms. Skloot and the Lacks family for persevering in this endeavor. We all already benefit from Henrietta's contribution, unknowingly, but now we can benefit from the lessons learned from the stories of her and her family, and have the correct names and faces in mind when we feel gratitude for even the littlest advancements in medicine. If I could give all of you hugs right now, I sure would.

THE IMMORTAL LIFE OF HENRIETTA LACKS by Rebecca Skloot is part examination of the HeLa cell, a cell taken from (not donated by) Henrietta Lacks when she was being treated at Johns Hopkins for cervical cancer. The other part of this book tells the story of Henrietta, and her family both before and after her death. During the 1950s Henrietta Lacks had a two-timing husband, five children, and several medical problems that she left untreated, including syphilis. When she learned she had cervical cancer, she also ignored that for as long as she could but eventually went to Johns Hopkins Hospital, where she could receive free treatment. Shortly before Henrietta died, Johns Hopkins took a tissue sample from her cervix. As was routine and perfectly legal in the 1950s and for many years later, no one asked for her or her family's permission. And no one acknowledged her for her "donation" when the resulting HeLa cell made possible so much medical research and discoveries. I should mention that Henrietta was black because that fact has everything to do with her children's reactions years later. Because the HeLa cell could live indefinitely, which other cells could not, HeLa was reproduced in large quantities. Johns Hopkins gave the HeLa cell to just about anyone who asked all over the world at no cost. As a result, medical research was advanced, but for years Henrietta's family was never aware of any of it. No one was deliberately hiding anything from them; but no one felt it necessary to tell them. The first the family heard of it was when Johns Hopkins wanted to test their blood 20 years later. And there began the first of many, many misunderstandings. Day, Henrietta's husband, got the call but understood that they wanted to get blood samples from Henrietta's children to test them for cancer. So they all gave blood samples, then became angry when they were never given results of the "tests." The Lacks family was angry with Johns Hopkins Hospital and University and the researchers working with HeLa cells for more than 30 years for various reasons, all misunderstandings. And they most often didn't change their minds, even when told otherwise. The author of THE IMMORTAL LIFE OF HENRIETTA LACKS, Rebecca Skloot, had the patience of a saint! She gave up years of her time in pursuit of information for this book, much of it wasted because of the family's misunderstandings. And even when things appeared to be going well, a family member might suddenly mistrust her, again as a result of a misunderstanding (that she was working for Johns Hopkins, who they also mistrusted as a result of misunderstanding). Once, one of Henrietta's children, Deborah, even went so far as to physically attack Skloot because of a (you guessed it) misunderstanding. So much of this book is devoted to clearing up misunderstandings, I found it mostly frustrating. However, Skloot did clear up the misunderstandings and, in doing so, told interesting stories within this story, for example, the actual history of Johns Hopkins, so mistrusted by not only the Lacks family but many other black people as well. Skloot also related science in easy-to-understand language. It was a pleasure to read for that reason but also because, although I was aware of the various research projects she mentioned, I had not known how a minute cell had made them possible.

Wow. This book should be required reading for scientists and students of life. The true story of Henrietta Lacks and her family has finally been told, beautifully, in this book. The book encompasses science, ethics, and the story of a family who was terribly wronged in the pursuit of scientific research. I could gush about this book for pages but I'll try first to hit the main points of why this book is so remarkable in list form for the sake of brevity: 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.

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.

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, [...]

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 Deborah Ultimately, 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.

Very interesting , a definite read!

Muy buen producto, llego en buen estado y buenas condiciones

Livro fantástico, vale muito a pena.

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.

Ich habe diese Buch, einmal angefangen, kaum noch aus der Hand gelegt. Aufmerksam gemacht hat mich eine Professorin bei einer Übung im Rahmen meines Studiums, die sich ebenfalls um Krebs und andere Zellabnormalitäten drehte. Heute habe ich das Buch, nicht zum wahrscheinlich letzten Mal, durchgelesen. Rebecca Skloot hat meiner Meinung nach etwas wirklich Großartiges mit diesem Buch geschaffen und ich hoffe, dass möglichst viele Menschen auf der weiten Welt es noch in ihren Händen halten werden. Sie schafft es, die Wissenschaft so verständlich wie möglich auf Papier zu bannen und dabei nie die Geschichte dahinter aus den Augen zu verlieren. Manche meinen nun, dies sei ein weiterer Versuch aus der Hinterlassenschaft von Henrietta Lacks und ihrer Familie Geld zu schlagen, doch ich möchte glauben, dass es wirklich darum ging, einer Frau die Anerkennung zuteil werden zu lassen, die ihr meiner Meinung nach zusteht. Wenn es nach mir ginge, würde ich dieses Buch für Studierende der Medizin und anderer Richtungen wie zum Beispiel Molekularbiologie als Pflichtlektüre einführen. Es ist wichtig, besonders hier nicht zu vergessen, dass hinter allen Proben, Ergebnissen, etc. und den damit verbundenen Errungenschaften auch immer ein Mensch steht. Und dass die Wissenschaft auch nach dem zweiten Weltkrieg nicht immer im besten Interesse jener handelte, von denen diese Proben stammten oder an denen die neuen Wirkstoffe getestet wurden. Die Geschichte Henriettas und ihrer Familie, besonders ihrer Tochter Deborah, gehört hier genauso erzählt, wie die Geschichte und Entwicklung der Wissenschaft, die die damals von Henrietta entnommenen Zellen ausgelöst haben. Ich habe dieses Buch sehr genossen und halt es für eines der wertvollsten, die ich bis jetzt gelesen habe. Empfehlen kann ich dieses Buch für jeden, der einen Blick hinter die Kulissen der heutigen Medizin und besonders auch der Krebs- und Genforschung werfen will. Man begibt sich auf eine spannende Reise zu den Ursprüngen von Methoden, die heute Routine sind, damals aber noch in Kinderschuhen steckten oder gar erst durch die Zellen von Henrietta möglich gemacht wurden und die heute jeden Tag die Leben vieler Patienten verändern.

One of the best written non fiction books you can read, the quality of the research and the author’s representation of the people and the emotions behind HeLa are exceptional.