The Immortal Life of Henrietta Lacks

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.

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.