The beginning of this book was interesting and kept me listening. I learned some interesting information about cell research. But sadly by the time I began listening to Part 2, my interest was waning. The trials and tribulations of the Lacks children (mainly as adults) took over the story and became tedious. I think Skloot became too involved with the family, thus losing her objectivity and was unable to write an unbiased story. I finished the book but was disappointed with the final 1/4 of the book.
The narrators did a fine job and their delivery helped me make it to the end of the book.
I am a scientist, and I enjoy reading books about science that would also appeal to the general public. This book is wonderful: I really enjoy the interweaving of science with the lives of the people in Henrietta's family. It is so interesting to learn about the history of the family, as well as about all the things that these cells have been used for, and all the things they have been involved in.
Always moving. Always listening. Always learning. "After all this time?" "Always."
About a month ago, I donated blood at the American Red Cross. I'm there about every other month - or exactly at 56 days, depending on how persistent those cheerful calls, with their underlying tone of urgency, are. Last time I was there, there was an addition to the binder of forms I needed to review: a disclosure that my blood could be used for research, and if I didn't agree to that, I shouldn't donate.
I was puzzled: why the consent now, since Rebecca Skloot's "The Immortal Life of Henrietta Lacks" had been published in 2010? I hadn't read the book, but I had followed the debate about informed consent. I didn't really think about how the Lacks family felt about Henrietta's cells (called HeLa) living in labs twice as long as Henrietta herself did. I sure didn't think about HeLa economics.
On June 13, 2013, the US Supreme Court ruled that naturally occurring genes cannot be patented in Association for Molecular Pathology v. Myriad Genetics, Docket 12-398. On August 7, 2013, the National Institutes of Health announced that they had reached an agreement with Henrietta's descendants to use HeLa cells with the informed consent of a board, including two of her family members.
I heard an interview with Skloot shortly after on NPR, and decided it was time to read/listen to "The Immortal Life." I was astounded by the sheer tenacity of HeLa cells (cancer cells from an especially aggressive form of cervical cancer caused by one of the HPV viruses, strengthened by untreated neuro-syphillis) and by the research and discoveries based on those cells. HeLa was instrumental in the development of the polio vaccine, tests to identify cancer, studies on chemical toxicity . . . and so much more. When I checked PubMed as I wrote this review, there were 76,057 peer reviewed articles with HeLa mentioned in the abstracts.
Skloot's careful research, wonderfully descriptive writing, and absolute respect for the Lacks family was evident. Skloot described the family and some of its very memorable members, especially Henrietta's daughter, Deborah, who really wanted to know the HeLa story - but was also afraid to find out everything, for good reason. Skloot avoids a sociological analysis of the Lacks family, which is good - that would have made them a 'study', not real people. There was an overarching irony: despite the invaluable contribution Henrietta made to medicine, most of her surviving family did not have medical insurance.
Skloot was careful to use the actual dialect and pronunciations of the people she interviewed in the Audible book. I don't know how it looked in writing, but it made a good listen. The narrators, Cassandra Campbell and Bahni Turpin, worked well together.
I'll still donate blood, of course - but from now, my imagination of what my cells are doing won't be limited to surgeries involving people who have the same blood type.
This Audible book doesn't come with a downloadable reference guide, but there are pictures of the Lacks family and a lot of the scientists mentioned in the book available on Google Books.
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I am an avid eclectic reader.
This is a well-written non-fiction book, that provides back ground information about unfair treatment of minorities by medical research. Cassandra Campbell and Bahni Turpin did great job with the narration of the book. The story of Henrietta Lacks and her family is interesting and the discovery and care of the Hi La cells. One major item about the family is the lack of education played a major role in their understanding and ability to control the situation. The book accomplishes its goal of promoting proper documentation of biological tissue research. It raises the question of ownership of our own tissues and whether or not we have proprietary rights to our bodies in situ or in vitro. This question needs to be answered NOW not in the future. The other teaching of the book was how important education is to each individual. This is an absolute must read book for everyone on this planet.
This is an important story. It is thoroughly investigated and well written. BUT, it is not s good audo book b/c of all the detail. Do yourself a favor -- clear your schedile, and settle in w/ a good old fashioned HARDCOPY.
Heard about this book on NPR's 'Fresh Air.' The story of Henrietta's 'HeLa' cells are mind blowing, the way they have impacted our lives in so many ways. This story really becomes the story of Henrietta's family, who are unfortunately extremely naive in terms of the impact her cells have had on medical history. One feels very badly for them, and frankly, whenever I have to sign a concent form in a Dr.'s office, I'm super sensitive to any verbiage stating my cells can be used for commercial purposes. The bummer about this is the amount of (boring) detail the author gets into tracing the legacy and history of cell culturing in our society. Great research, but at times reads like a science book.
This is a necessary book - aside from informing us about what seems today like the the dark ages of cancer research and the reported unfair treatment of minorities by the medical community in the era of Henrietta Lacks, it's time we all became more enlightened as to the fate of our body products once we part with them in a doctor's office, lab or hospital. This book raises important issues as to the space required for storage of all discarded tissue, which is unlike printed material that can be converted to digital format.
As an historical novel there are bound to be characters that are not "likable" nor relatable in the usual fictional sense. This family was troubled in many ways, in addition to the implied racial implications, the possible malpractice issues regarding the HeLa cells, and losing any financial stake in the success of the HeLa cell line. The family came to Baltimore to be part of the then growing steel industry. They were originally from a bare bones town in Virginia, having farmed their own tobacco crops after indirectly inheriting the property after being emancipated from slave status. There were some hard workers amongst the marginal characters, but basically this was a hard-strapping family who had to make do in order to survive. And several of them fell by the wayside to crime and mental dysfunction.
The book is well-written, even with the frequent disjunctions in time periods. It can be difficult to follow the genealogy and plethora of major and minor characters, and the myriad mentions of various studies. But all that is mere technicality.
The book accomplishes its goal of promoting proper documentation of, and credit for - financial or otherwise - biological tissues that are saved and used for research. It raise the question of ownership of our own tissues, and whether or not we have proprietary rights to our own bodies, in situ or in vitro.
This is one of those books with way too many reviews already, so let me add what I can. I came into this book pretty skeptical. Medical ethics is one of the most overwrought of fields, mainly because a vast number of research projects, worth billions and billions of dollars, are all required to employ bioethicists; and every research hospital in the country has to have a team of them on staff who all have to publish. The field's origin story is that of Dr. Robert Knox, a 19th century Scottish anatomist, who made it known that he needed bodies for his dissection lab, the fresher the better, no questions asked. The moral questions that this story raises are perfectly obvious, as are those of the Tuskegee Experiments, for example, in which doctors withheld treatment from poor black men with syphilis in order to study the progression of the disease. There are real, serious bioethical issues out there.
Rebecca Skloot makes a valiant effort trying to convince us that the ethics of the Henrietta Lacks case are similarly fraught, and while I'll agree that there are some interesting twists and turns to the story, I'm just not buying the central premise. Henrietta's cancer cells were taken from her biopsy and grown without getting her consent or even informing her. This was neither illegal nor unusual (in how the patient was treated--the cells themselves were very unusual) at the time. About halfway through the book, in a section on contemporary law, Skloot seems to say that such a thing would still not be illegal today, though she was not 100% clear on this. The doctor who collected the cells did not directly profit off of them--he gave them away freely--though biomedical companies today do sell batches of HeLa cells for profit, and certainly lots of researchers have achieved fame and significant salaries on the back of HeLa research.
The most interesting part of the book is when Skloot explains the history of the development of cell culturing techniques over the 1950s through 1980s, which HeLa was at the center of. Though the same two or three examples of the cell's importance get mentioned again and again throughout the book--that HeLa was shot into space, that it's used to test cancer therapies--the real contribution of the cells to science was in allowing methods for cell culture to be developed on an extremely hearty strain. Though other immortal cell lines have been discovered since, HeLa was the first, and is still one of the easiest to grow. And apparently the HeLa strain was only found after the exact same culture techniques were tried on dozens of other people's cancer biopsy samples without success, an important example of the need for persistence in science. It's not certain just how much HeLa advanced medical science, but clearly by quite a lot. Perhaps the doctors should have gotten Henrietta's permission, but honestly if she'd said no and the doctors had obeyed, the world would be a significantly worse place, and Henrietta wouldn't have lived any longer.
Unfortunately, the book really bogs down in the author's story of her personal interactions with the Lacks family. Parts of this story are interesting--Henrietta's youngest daughter suffered horribly at a mental asylum for indigent blacks in a grisly example of the genuine ethical violations common in medicine at that time--but there's a seriously self-indulgent vibe to the whole thing on Skloot's part. She's the kind white woman dropping in to help the poor black family who have been so mistreated by medicine and other journalists and even a genuine con artist. We get it: you really are well-intentioned, and you're even donating some of the profits from the book to a scholarship fund for the Lackses. This doesn't justify the book being twice as long as it needs to be. Skloot clearly has some talent as a science writer, and I'm eager to see her tackle a subject beyond the one that piqued her interest ten years prior as a high school student sitting in a biology class.
A note on the narration: I like Cassandra Campbell's voice, but she's painfully slow. I recommend at least 1.25X speed.
There is no Frigate like a Book To take us Lands away Nor any Coursers like a Page Of prancing Poetry – Emily Dickinson
I can really appreciate the depth of the research that went into this book. Since the book is structured around the chronology of Rebekka Skloot's research, it becomes apparent that it was pretty much her whole life for many years. I found the weaving of human interest stories about Henrietta and her family along with interesting scientific facts to be an engaging technique. It's interesting that several reviews I read fault her for NOT being scientific enough and for including her own story into the book. To me, those parts made all the science palatable and the book very readable!
One thing that struck me is the depth of the ignorance of all of the Lacks. They were underprivileged and uneducated mostly. In addition, there had been a lot of inbreeding in their family, so their were other issues that hampered their development. They mostly had so little education that even basic scientific explanations swished right by them and they relied more on some kind of magical thinking or myth. One myth was how Johns Hopkins medical center was snatching black people off the street to do medical research on them. In fact the author shows how Johns Hopkins was founded on the principal of helping blacks and any indigent people! There are definitely morally ambiguous decisions that were made at Johns Hopkins, but it didn't involve snatching blacks off the street! I like the way the author then went back in history to explain how this type of thinking originated. She said black oral history is filled with stories of "night doctors" who did kidnap black people and use them for research. Evidently slave owners used prey on blacks' belief that ghosts caused disease and death and their fear of these "night doctors" by dressing up as a ghost in a white sheet and scaring them into thinking that they were going to be taken away. This was a technique to keep the slaves from running away or meeting together, evidently. And, most interesting, is that these white sheeted costumes were the precursor of the Ku Klux Klan robes.
In the end, I found the book easy to read and follow, but I did get a little tired of it. I'm really only marginally interested in HELA cells, so this was a lot to read. It's a tribute to the author that she could make it as interesting as she did!