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.
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.
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.
on March 6, 2010
The author has set herself a difficult task here, toggling back and forth between the history and the science of the harvesting of Henrietta Lacks's cells and their importance to research and discovery, and the human story of Henrietta Lacks's children, uneducated, poor, without health insurance, some criminal, and all without a cent to show for the billions that have been made from the marketing of their mother's cells. Does author Skloot succeed? Only about halfway. The science can be hard going for a general audience. Skloot does somewhat better presenting the legal and philosophical arguments for and against the use of human tissue in medical research without the consent of or compensation to the human donor. The book gets bogged down in what should be its most accessible part: the tale of Henrietta's family. Skloot was constantly threatened with being cut off from access to the Lacks family, and it shows. There's not a whisper of outrage here about a fourteen-year-old's impregnation by the nineteen-year-old cousin with whom she'd shared a bedroom since she was four; and while Skloot does say, quietly, that Henrietta's husband-that same cousin--brought "bad blood" (syphilis) home to her from other women, and much later acknowledges quietly that the cervical cancer that killed her was sexually transmitted, she never lays the blame for Henrietta's death at her husband's feet and apparently never makes it plain to Henrietta's profoundly ignorant children that it was their father who ultimately caused their mother's death. Narrative holes in the story aren't explained; Sonny Lacks's children appear to have sprung into existence without the medium of a mother; the only daughter of central figure Deborah Lacks all but vanishes from the story after her infancy. We get, instead, an embarrassing and prolonged account of a laying-on-of-hands by a Lacks cousin. This is Skloot's first book, and a dedicated editor who wasn't afraid of the Lacks family was needed. Should tissue be harvested from human donors without their consent, and, even if consent is given, should the donors be compensated? The book explores that question in detail while appropriately leaving the difficult answer up to the reader. What is plain, even in this uneven and somewhat undisciplined book, is that the uneducated, poor, inbred and syphilis-damaged Lacks family certainly could have used a cut of all that money that still is being made from the marketing of Henrietta's cells.
on August 31, 2010
Well researched and an intriguing story, but the book is bogged down and mired in unnecessary details and asides. The author's passion for the subject shines through, and her strong, clear sentences help, but overall, the book was a let-down.
on December 5, 2011
The Immortal Life of Henrietta Lacks / 1400052173
I was really excited to read this for a book club; I'd heard that the book was really wonderfully written and informative. Now having read it, I'm really struggling with my review: how do you rate a book that has a great first half but which I only finished because I didn't want to show up to book club not having read the whole thing?
The first half of this book tells the story of Henrietta Lacks, and how she came to be so incredibly important to the field of modern medicine. The chapters that cover the technology used to work with her cancer cells and which give a sort of 'history of modern medicine' overview are extremely interesting and informative, and well worth the investment of this book, I think.
There's a lot of valuable discussion of the ethics of medical research, and how our understanding has grown and changed over the years. For instance, Henrietta's cells were used without compensation because the mentality at the time was that charity care in a free hospital meant that the patient's cells, once 'donated' for their own diagnosis, could then be used without permission and compensation for research. Whether or not this is fair to the person from whom the cells originated is a complex question that we've answered differently as a society over the years, and I appreciate the balanced look provided in the "science sections" of the book.
Unfortunately, in the second half, this book tails into a sort of autobiography of the author as she follows Henrietta's surviving family and children around the country. And it's this half that is something of a slog to wade through. Everything discussed here is interesting, but it becomes repetitive quickly as the author covers and recovers the same ground (Henrietta's cells were taken without her permission; her surviving children have not been compensated adequately), and several members of my book club thought that the author toots her own horn enough to be seriously distracting.
Worst of all, there's a feeling in several places that the author is carefully editing and editorializing the 'facts' in order to work peacefully with the family -- in the chapter where the children are abused by their new step-mother, for instance, you'd be forgiven for assuming that their father dropped off the face of the earth, because I'm not sure he even appears in that chapter once the new step-mom moves in. And, again, when Henrietta's daughter complains that she wants the scientists to tell her what her mother was like, and the things she enjoyed, it's frustrating as a reader to not be able to ask why her father (and indeed the community at large) isn't able to tell her these things -- after all, Henrietta and her husband grew up together in the same house!
The second half of the book is framed in a sort of moral crusade: the family should be compensated for their mother's cells because they can't even afford proper medical care! I sort of agree with everything in that sentence EXCEPT the "because". I think the family should have universal health care regardless of whether or not they hit the genetic lottery in terms of their mother, and I also think they deserve some kind of compensation for all they've been through. I think by linking those two issues in a cause-and-effect sort of way, however, really obscures all the other poor people in Henrietta's community who are also being denied health care on a daily basis.
I guess, in the end, I liked what I learned in this book, but the way it was presented made me feel like the author was pushing an agenda and a 'version' of history. That makes me uncomfortable in a supposedly non-fiction biography / science text, and so I'm not sure how much I personally recommend this past the first half.
~ Ana Mardoll
I found the beginning of this utterly captivating, very hard to put down. Skloot does a good job of addressing the science behind the subject without making it too technical. The part where the story derails is when the family gets involved, particularly the time spent with Mrs. Lacks' daughter, Deborah. The author seems to focus more on the struggles of Deborah and her apparent disabilities, maybe in a human-interest sort of way, but I felt that it began to become a bit more exploitative. I think it is very important to shine a light on the unethical way the black population was treated by the medical profession and how shameful it is that the Lacks family has not benefited in any way from the massive scale of production of the HeLa cell line. If this book had merely contained the first half, or left the drama of the second half out or at least shortened it some, I think this book would have appealed to me more as a whole. I would certainly recommend this to friends, but with a disclaimer of the soap-opera like drama that comes in at the end.
on March 16, 2010
I enjoyed that parallel stories of the Lacks family and the scientific issues. Both stories are well written and enlightening. She explains the scientific concepts in terms a lay person can understand. "Appalling" was a term that came to mind throughout the book. There was appalling treatment of the African Americans by bigotted whites and appalling studies conducted on unaware patients by god-playing doctors. I learned as much about racism in America as I did about science. On the downside, the book dragged in the middle. It would have benefitted from tighter editing. I got tired of the Lacks family whining, chapter after chapter. Skloot closes the book by highlighting some significant bioethical issues still pending in the court system.