on February 5, 2010
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.
This is hand's down one of the best books I've read in years and I wish I could give it more stars. It is going to be difficult to capture exactly what makes this book so outstanding and so captivating, but I'm going to give it my best shot.
First of all I want to say I am STUNNED that this is the author's first book. She has poured ten years of her heart, soul, mind and her life in general in this book. What she has given birth to in that long period of labor is worthy of her sacrifice and honors Henrietta Lacks and her family.
Other reviews have given the outline of this amazing story. What I want to stress is that Ms. Skloot has navigated the difficult terrain of respecting Mrs. Lacks and her family, while still telling their story in a very intimate, thorough, factual manner. What readers may not know is that the Lacks family isn't just a "subject" that the author researched. This is a real family with real heartaches and real challenges whose lives she entered into for a very long season. The Lacks' family has truly benefitted from the author's involvement in their life and that is something I am very appreciative of. I believe that Ms. Skloot was able to give Henrietta's daughter, Deborah, a real sense of healing, deliverance, peace and identity that she had been searching for her whole life...that story alone would have made the book for me.
It would have been very easy for the author to come across as condescending or patronizing or possibly as being exploitive as she wrote about a family that is poor and uneducated. Instead the story is infused with compassion and patience as she not only takes the family along with her on a journey to understand their current situation and the ancestor whose life was so rich in legacy but poor in compensation; she educates the family in the process. I get the sense that the author grew to genuinely love Henrietta and her family. I am in awe of this level of commitment.
The author has managed to explain the complex scientific information in a way that anyone can comprehend and be fascinated by. The author's telling of the science alone and the journey of Henrietta's immortal cells (HeLa) would have made the book a worthy read in itself. Ms. Skloot and Henrietta captured me from page one all the way to the final page of the book. I read it in one pass and I didn't want it to end.
The author manages to beautifully tell multiple stories and develops each of those stories so well that you can't help but be consumed by the book. This is the story of Henrietta. It is the story of her sweet and determined daughter, Deborah. It is the story of the extended Lacks family and their history. It is a story of race/poverty/ignorance and people who take advantage of that unfortunate trifecta. It is a story about science and ethics. It is a story that should make each of us reflect on the sacrifices made by individual humans and animals that have allowed us to benefit so much from "modern" medicine. It is a story about hope and perseverance. It is a story about love and healing.
I cannot imagine a single person I know who wouldn't love this book and benefit from reading it. I will be purchasing the final copy of the book and am looking forward to reading the book again.
I am counting the days til Ms. Skloot writes another book and can't wait to attend one of her upcoming lectures. A fan is born!
As I recall this book was categorized as CANCER, I believe it might be more aptly described as science based non-fiction. In the last two decades I've seen occasional news items alluding to human cells taken from a black woman in the 1950's that have been replicated millions of times. The cells are referred to as HeLa and on the face of it I wouldn't have thought there was much of a story behind the extraction of these cells and their use by the biomed industry. However, this book dispells that rather naive assumption completely and puts a name and a face, a family, and a story behind the contents of many petri dishes and slides. THE IMMORTAL LIFE OF HENRIETTA LACKS explains how the cells were obtained, replicated, distributed, and used without informed consent of the owner and family by John Hopkins and how they benefitted mankind w/o compensation to the family. Author Skloot tells the story of a family victimized by socioeconomic conditions and racism that can't get fundamental things like health coverage while these cells make a lot of money for the health establishment. It is a disturbing read that will stay with the reader long after the book is finished. It may also make the reader take a long hard look at the need for standardized health care in our society among many other things.
The one thing that I found fascinating about this book is how Skloot managed to take a generally dry topic that might have been addressed in a scientific textbook and humanized it on a very personal level by developing a close relationship with Henrietta's family. The input received from the family took this book to a higher level and made it a very personsl story. From my perspective, it was very hard not to get involved with the Lacks family and not feel their sense of betrayal and loss.
on July 31, 2010
I'm a big fan of science and medical non-fiction, so when I saw the rave reviews for The Immortal Life of Henrietta Lacks, I was excited to read it. It started off strong; I'd give the first half five stars. The oral history of the Lacks family was fascinating, and I loved reading about how the cells got their start in the lab. When the author introduced the adult family (Deborah, et al), I felt a strong sympathy for them and what they'd been through. I was already recommending it to friends, anticipating that the second half would be as good.
However, once I got to the second half, it went downhill considerably. The writing was fairly tight in the beginning, keeping all of the stories woven together in a comprehensible way, but seemed to unravel as the book went on. When I read the introduction, I didn't understand why Skloot was so defensive about inserting herself into the book (in my experience, medical non-fiction authors do it all the time), but I soon realized why - because by the second half, the book becomes less about HeLa, science, history, and ethics, and instead turns exclusively into a memoir about Skloot's dealings with the family. And at this point, the family became unsympathetic and insufferable. The writing became repetitive, somewhat informal, and ridden with unnecessary details. One reviewer called this book "deftly written" and I'd have to disagree. The second half gets one star.
The book ended on a strong note, with the Afterward. The Afterward took us back to questions of bioethics. As I was reading it, I wondered why the Afterward was a separate part - couldn't it have been woven into the second half of the book?
In short, I thought this book was merely ok, but as the reviews show, a lot of people loved it. If you think that you're one of the people who will love it, read it. If you're looking for a book that's just outstanding, look somewhere else.
Equal parts history, psychological drama, expose and character study, Rebecca Skloot's gripping debut is a deeply affecting tour de force that effortlessly bridges the gap between science and the mainstream.
Her subject is the multilayered drama behind one of the most important--and in many ways, problematic--advances of modern medicine. Captivated by the story of Henrietta Lacks, a poor African-American woman whose cervical cancer cells (dubbed HeLa) were the first immortalized cells grown in culture and became ubiquitous in laboratories around the world, Skloot set out to learn more about the person whose unwitting "donation" of the cells transformed biomedical research in the last century. Her research ultimately spanned a decade and found her navigating (and to some extent, mediating) more than 50 years of rage over the white scientific establishment's cavalier mistreatment and exploitation of the poor, especially African Americans.
Skloot deftly weaves together an account of Lacks's short life (she died at age 31) and torturous death from an extremely aggressive form of cancer; the parallel narrative concerning her cells; and the sometimes harrowing, sometimes amusing chronicle of Skloots's own interactions with Lacks's surviving (and initially hostile and uncooperative) family members. Moving comfortably back and forth in time, the richly textured story that emerges brings into stark relief the human cost of scientific progress and leaves the reader grappling with many unanswered questions about the ethics of the scientific endeavor, past and present. While the goals of biomedical research may be noble, how they are achieved is not always honorable, particularly where commercialization of new technologies is at stake. Skloot offers a clear-eyed perspective, highlighting the brutal irony of a family whose matriarch was a pivotal figure in everything from the development of Jonas Salk's polio vaccine to AIDS research to cancer drugs, yet cannot afford the very medical care their mother's cells helped facilitate, with predictable consequences.
The LA Times book review section named Skloot one of its four "Faces to Watch in 2010," an honor that, based on "The Immortal Life of Henrietta Lacks" is well-deserved.
Five stars--it was hard to put down this compelling, admirable and eminently readable book.
on August 25, 2010
I enjoyed the first half of the book. It was informative and educational. The second half - not so much. It took a bad turn with the introduction of Deborah and their trip together. The author depicted her as a woman who has the mind of a hyperactive 5 year old with ADD. "Oh my god. . . . I did this to her?" Maybe. Maybe not. The book went from the scientific and factual to the land of superstition and sensationalism I was left with the impression the book was a collage of facts and embellished observations. It's a good idea to leave your readers for a desire for more. I was left with a desire for less.
on October 5, 2011
The Immortal Life of Henrietta Lacks is a book whose content is riveting but whose delivery is, ironically, "lacking" (Lacks-ing?). Skloot deserves credit for doing what no one before her successfully had: creating a cohesive narrative spanning the decades from Henrietta's birth until the present, weaving in plot lines from the scientific and medical communities with more intimate stories about Lacks' family and even about the author's own internal processes. The book begins with titillating stories about Henrietta's childhood and what events transpired to lead her down the path to unwittingly surrendering HeLa cells to Johns Hopkins, and continues by discussing the story of HeLa cells' evolution both literally (genetically) and as a research phenomenon. She does a good job of simplifying potentially overwhelming material for readers of varied scientific backgrounds while still keeping things interesting enough for medical anthropology buffs.
As many other reviewers in the 1-3 star range have noted, it is at this point that the book's quality begins to decline. To be sure, this is in part due to the abrupt shift in content, as the book becomes a familial biography after 150 pages of medical non-fiction. But my personal discomfort reading the latter half of the book grew chiefly out of Skloot's infantilization of the Lacks children (Henrietta's four living children at the time of the book's writing). Skloot issues a caveat early on, which is that errors in grammar/syntax of the dialogue in the book are preserved in order to lend authenticity to the voices of those being interviewed. At first, this made sense to me. There are certainly noticeable differences in speech between north and south, educated and non-educated, rich and poor, and from culture to culture, and all these come to light in The Immortal Life's cataloguing of quotations from the family members. I even appreciated that she had made efforts not to correct the Lacks' manner of speaking, as this would only repeat the disrespects done to them in previous decades, ones it seemed Skloot was hoping to rectify or at least counter with her earnest portrayal of the story.
But I began to feel, after a certain amount of pages of dialogue, as if her sprinkling of broken phrases and malaprops had become gratuitous. It was as if she were beating the reader over the head with a mallet, pounding in, "these people are so poor and messed up they can barely speak English!" A more seasoned reporter with a more sensitive approach might not have felt so compelled. I struggled with the possibility that perhaps, had Skloot *not* constantly relied upon dialogue to make her point, that I wouldn't have understood the utter poverty and destitution of the Lacks. But I believe that descriptions would have better served her purposes, and would have paid more respect not only to the subjects but the reader too -- Skloot should have substituted her weak dialogue with better-written prose paraphrasing conversations, with occasional examples.
Additionally, Skloot depicts herself as the translator between the Lacks and the greater world. She is apparently the one to first explain the meaning of the term "cell," she is the first white person to come into their world as a benevolent force. In her effort to honestly insert her own experience into the writing, Skloot ends up idealizing herself as "Miss Rebecca" without disclosing the irony of these interactions. She describes how Deborah, Lacks' daughter, excitedly dresses all in black so as to resemble Skloot's look for their reporting adventures. She describes how one of the Lacks men cooks her a charred and fat-laden pork chop and trumpets the fact that she ate it to be polite. I believe that I would have felt more comfortable with Skloot's second half of the book if she had admitted and explored her own significance as another white researcher barreling into Clover, VA for self-serving purposes. Her beat-around-the-bush style is frustrating, and makes this reader wish that someone more direct like Joan Didion had edited the book for succinctness. Oh well.
If you are interested in HeLa and its origins, read the book. Just keep your expectations low and consider skimming the last part of the book. As a final thought, I might add to that the reason I give Skloot 3 stars is because I think the book's writing quality is rather fair (so, 2 stars) but her reporting efforts and her willingness to tread on thin ice for many years around the Lacks family are commendable. And also, she has managed to air some dirty laundry that many would not have read about, had the book been marketed too much as a scientific or medical read.
When she writes about cell biology, science, and the ethics of medical research, RS writes well. When she writes about the woman behind the HeLa cells, she provides little more than a sketch of a life. No surprise. There is very little to document the life of HL, any more than there is to document the lives of the overwhelming majority of people on the planet. Most life stories are just not that interesting in the telling. And so it is with HL. To be sure, the times she lived in, her family's place in the broader social history of the US, including the deplorable existence of race-based medicine and medical-research practices -- all of these are interesting in themselves. But as SL demonstrates in this exhaustingly overlong book, there's simply not much to say about HL herself. I can only assume RS realized this early on in her project, since she spends countless pages spinning out, in chapter after redundant chapter, the story of HL's descendants (her children for the most part). How many times can we be told that the sons want financial compensation (I don't blame them), and that the daughter wants to connect with a mother she lost so young (my heart goes out to her). TILoHL feels, at almost every turn, as though it has been stuffed, stuffed, and stuffed some more: with unnecessary dialogue, with unwelcome editorializing, with irrelevant scene setting. And just when the bloat of this book threatens to burst through its seams, one arrives at one of the longest acknowledgment sections in the history of publishing. For all the legions of people who were evidently involved in reading, researching, fact-checking, and providing feedback on versions of this book, one might suppose it truly were the outstanding piece of popular science reportage that many reviewers claim it to be. I, for one, am at a loss to understand the hype. TILoHL is exceedingly well documented. It is also several hundred pages too long. It would have made a fine New Yorker profile, not a book. At least, not this one.
on January 14, 2011
I started out really liking this book. Although I first heard of HeLa cells (as I vaguely recall we were told she was "Helen Lane") back in med school in the 70's (not so far from the Lacks' family home), I really didn't know that much about them, even that I had benefited from them when I joined the lines for the new polio vaccine in the 50's. So I liked the scientific history. The basic story of Henrietta and the sociology of race and medicine back then was also interesting.
BUT, the book devolved into a bloated history of the tenacious efforts of the author to get close enough to the family to get their stories, as well as their various stories. Some of it was interesting, some was simply TMI. And, although those stories shed some light on the consequences of the "medical apartheid" of the 50's, 60's, 70's etc., they also showed the family as rather dysfunctional and apparently greedy in a selfish sounding way, making one wonder about their claims for the profits that came not only from their mother's cancerous cells, but the dogged efforts of scientists to use them for the benefit of others (and the pioneers did it with no thought of monetary reward).
Additionally, although there were more acknowledgments than in 10 average nonfiction books, with multiply redundant readers and fact checkers, some statements crept in that were either scientifically/historically inaccurate, or simply conjectures. These seemed to serve a polemic purpose that didn't fit in with an accurate history, and weren't really necessary; there was already plenty of info in the book about how badly poor black people were treated by society, including academic medicine.
For those who care, I'm referring in part to Henrietta's mentally challenged/damaged daughter (and who gave her congenital syphilis, the evil, white medical establishment?), who, according to the official at the state hospital, probably? (not certainly) underwent pneumoencephalography, which the author describes as a barbaric study involving drilling holes in the skull. Yes, the procedure started that way in the early century, but by the time the daughter might have been studied, it was routinely done via a lumbar puncture. It was not a benign test, but there were no CT or MRI scans in those days, and it was also done on patients who weren't poor or black or confined to awful state institutions. (I don't discount that whoever had it at that institution probably didn't give informed consent.)
Soon thereafter, the author described daughter Deborah's hives and erratic behavior as likely related to uncontrolled diabetes and hypertension. I've seen plenty of that, and that's not a conclusion I would jump to. And what does all that have to do with the primary story? The bulk of the second half of the book was the bonding of the odd couple Rebecca and Deborah, not Henrietta and HeLa cells.
These may be minor points, but for me they detracted from the overall impact of the story, and I couldn't help but wonder if there were other questionable statements in the book, even if I didn't have the knowledge to question them.
The author stated that the book was edited down considerably. Not enough, IMO.
on February 17, 2010
Just so id doesn't sound like I damn this book with faint praise, let me say that this was an excellent story told well (for the most part). I'll save the synopsis for others. Needless to say, Henrietta Lacks' story is just as gripping as the science that was done with her cells. You will most likely enjoy her story (as I did).
The author spends a rather substantial portion of the book describing her own efforts. It didn't add to Henrietta's story and leaving it out would have made for a better, more concise narrative.
Black people were treated inhumanely to say the least (go look up the Tuskeegee Syphilis Study, for example). At the risk of sounding callous, this is well trod ground and some of it could also have been omitted for the sake of brevity without losing any of the story's impact.
Lastly, there is an implicit condemnation of the doctors that took her cells (the author does say that this was "common practice" at the time). I can tell you that as a former cancer patient who has been biopsied more times than I care to remember, once a doctor removes something from you, it's gone. They are not going to pay you for it.
Those criticism aside, this is a worthy read.