Sure, I'd love to hear your story....
Great story about how science and families can both be disfunctional. This one explains that sometimes things done in the name of science to advance the health of people can completely set aside the humanity of what they are doing. And that children, our most precious commodity, truly need love, care, and acknowledgment that they are important. This story explains and advocates both. Really well done.
Audible listener who's grateful for a long commute!
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 found the premise of this non-fiction book fascinating. It teased the idea of immortality as a possibly attainable thing and teased that one woman's cells were responsible for some of the most important advances in medicine. But after reading the book it became clear that these teases were for dramatic effect and, while not untrue per se, take the facts out of context. Lacks' cells aren't immortal really. Rather, the amazingly aggressive cancer cells that killed Lacks are "immortal". And those cells aren't really immortal either, they still need to be maintained to be kept alive and multiplying. As a by-product, those cancer cells contain Lacks' DNA. And to be clear, the cancer cells haven't caused the advances in medicine. The scientists who developed the processes and treatments were the heroes. But it helped to have an aggressive, self-replicating virus to make experimentation easier.
Other problems I had with this book were the needless details about Lacks' relatives. I understand that due to the stubborness of the family, they wouldn't consent to the writing of the book without some of this information being brought out. They wanted Lacks' story to be told (but they also wanted to sue people for violating her privacy when they tried to put Lacks' name and family DNA information in medical journals - ???).
However, some of the information is simply filler (the fact that one of Lacks' children went to prison for murder is a complete waste of time). The only reason why I believe Skloot put these stories in is because, as she admitted, she had a sheltered life prior to her experience with the Lacks family and this was her first time actually interacting with members of another race and lower socio-economic means than what she was used to. She found it interesting.
Towards the end of the book Skloot even tries to defend her reasoning for putting this information in the book. It comes off as apologetic, which seems that someone (possibly her publisher or editor) tried to tell her it was a bad idea. She should have listened.
But the biggest issue I had with the book also happened towards the end of the book. Skloot shifts her telling of events to include herself as a participant. She begins to tell the reader about some of her research and interacting with Lacks' family. The entire tone of the book changes and it almost sounds like a fictional novel. Skloot writes more than just about going to certain facilities and speaking with people. She goes on about her feelings and, at one point, has a religious experience. It's unimportant, self aggrandizing and damages any impartiality that she had about any of her research. It also caused me to question how impartial she was in the conveying of any of the information in the book. In an age when fair and balanced journalism seems to be harder to find each day Skloot should be ashamed of this particular writing choice.
I picked up this book for the possible scientific information inside and about Lacks as a curious by-product. I presumed that a certain amount of information about Lacks' history was necessary to give the book a human aspect that would prevent it from becoming a scientific journal bore. However, I didn't buy this book to hear about the shenanigans Lacks' children got into after she passed away or about Skloot.
You'd be better off reading the free Wikipedia entry (if you still feel like spending, donate to the website). You'll save time and get a clearer understanding of the facts.
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!
This is really a fascinating story. The author awakens readers to an awareness of our need to ask questions about how our "everyday" blessings came to be. Scientists, like their test subjects, do not live in a vacuum, and though much good came from the HeLa cells, we are left to consider the implications of the naively predatory practices of the age. Were we to rewrite history, would we choose to leave Henrietta Lacks to herself and her familys' memory, or would we "consume" her again for all the scientific and medical good her sample cells promised? The author tells the HeLa story extremely well--it is both intellectual enough and personable enough to keep the average reader engaged. She explains her motivations and resists the urge to demonize science and medicine. Best of all she tells the Lacks' story with straightforword empathy. I am very glad I read this book.
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.
I enjoy literary fiction with character depth and psychological exploration. I am in my 50s, work in psychology, and love the outdoors.
This book was not a good story because it had too much science and not enough science to be a good science book. I kept waiting for the characters to be developed and none of them were. Overall, this was not engaging. This story could be told in a half hour.
This extraordinary story couldn't have held my attention more if it were fiction. The fact that it is true makes it amazing. It is a cautionary tale that is educational, inspiring, and thought provoking. The introduction and final interview with the author rounds it out. I've already started to re-read it and will recommended to my friends, especially those in book clubs. The performances by Cassandra Campbell and Bahni Turpin truly brought the "characters" to life. The emotions they express are raw and evoke deep compassion. This is one of those books that is better as a result of listening to it.
Rebecca Skloot's attempt to get researchers to think about the person behind the samples they work on is an important one. We don't like to be thought of as nothing but a number, much less a cell. When I first learned that genes could be patented and that research into the condition covered by that patent could be controlled as a result, it sounded like blackmail and I was shocked. That was nothing compared to the shock upon learning about HeLa through this story.Anyone involved in clinical trials should be thankful that steps have been taken to prevent a repetition of Henrietta's story.
Skloot makes it clear, however, that research into the many chronic and fatal conditions facing us is dependent on tissue donation and use. The manner in which they're obtained and used is what makes for ethical, not just medical, considerations.
Revelatory is the word that best sums up this book for me. I am interested in how the socioeconomic environment generally, and health systems in particular, affect our wellbeing, and I know about the inequities in the U.S. health care system that affect minorities and women. But all my studies did not give me the insights that this look into the death of one African American woman revealed. From the diagnosis and treatment of her cancer in the early 1950's, the book takes the reader on a journey through the labs of medical researchers, the theories of medical ethicists and the arguments in courts of law to explain how human tissues are used to research new drugs and treatments. But it doesn't stop there. The book parallels the scientific story with the saga of how one African American family experiences the American health care system: the indignities, the miscommunication, and the mistrust. I think everyone needs to read this book to understand what is going wrong with our health care system. But more importantly, white Americans need to read this book to better understand how people of color experience--or don't experience--health care in our country.
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.