![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Entry tags:
Review: The Immortal Life of Henrietta Lacks
In accordance with the wishes of several readers, anything that I wouldn't normally put in a fiction review has been cut-tagged. (In case anyone was wondering, the final count was 38 magnetic markers and 23 paper markers. The book doesn't close anymore. I wish I could cite them all, but I'd blow LJ's max word count.)
The Immortal Life of Henrietta Lacks
author: Rebecca Skloot
Published: February 2, 2010
ISBN: 978-1-4000-5217-2
369 pages
List price: $26.00US/$32.00CAN In the US, on sale in stores such as Target for 30% off
All page numbers are from the American hardcover edition.
The review part is quite simple: Everybody needs to read this book.
Interested in the history of science? You need to read this book.
Interested in medical ethics? You REALLY need to read this book.
Interested in racial relations in America, circa the 50s and 60s? You need to read this book.
Interested in depictions of class and racial privilege in modern America? This is your textbook.
Interested in the state of health care in America? You need to read this book.
Interested in reading about "a decadelong [sic] adventure through scientific laboratories, hospitals, and mental institutions, with a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist" [6]? You need to read this book. (Skloot doesn't add "Supreme Court appeals, consent laws, the Nuremberg Trials, treatment of the profoundly disabled, the Bromo Seltzer Tower and even 9/11" - but they all play a part too.)
The basic story is this: In 1951, Henrietta Lacks went to Johns Hopkins Hospital for the treatment of cervical cancer. The surgeon on duty biopsied the tumor before treatment and sent the cells to George Gey, who was experimenting with cell cultures, attempting to find a stable line.
The tumor cells were hardy beyond his wildest dreams. "HeLa" was the first immortal, stable, mass-producible cell line ever created, and the foundation of almost all cell research since. HeLa "factories" started as early as 1952 for use in developing the polio vaccine.
But nobody had ever asked Henrietta for permission. Nobody ever told her family - sharecroppers still living in their grandfather's slave shack - what was happening and why they kept getting called in to see doctors. White doctors. Eventually they found out *exactly* how important she was - and wanted to know "If our mother so important to science, why can't we get health insurance?" [168]
A lot of articles have told the story of the Hela cells; how they've been used, how they've been abused, even how they famously almost ended cell research by contaminating cell lines (all covered by Skloot), sometimes using the family for human interest background. Skloot sets out to tell the story of Henrietta and her family, interspersed with a basic history of cell research and ethical issues thereof. Her reporting on the human side is minutely detailed, working hard to portray the personalities involved - for example, the famous Hela cells almost died immediately after biopsy because the discouraged lab tech wanted to finish her tuna fish sandwich, "tired of having cells die after hours of work" [35]. It doesn't flinch from darker details too, such as how Henrietta became Hela and then was erased from history under the name Helen Lane. Sometimes she goes into details Skloot didn't intend to pass on, such as her own attitudes. Occasionally the extreme detail robs dignity that didn't need to be robbed. But mostly, she's a white woman working on a story about an exploited black family, and while she made friends with all members that she could and read up on the history of maltreatment of people of color being used as research subjects, she just never applies this to her own actions. The go-to word these days is "privilege," but "clueless" also applies, as does good old-fashioned "rude!" "I started calling Deborah, her brothers, and her father daily, but they didn't answer" [54]; "I... paged Sonny every few minutes" [67]. And that's just from the early pages. You'd think an intelligent woman, even one determined to get a story worth telling, would get a clue after lines like "Brother gets mad when white folks come askin [sic] about our mother." [159]
This is not an easy read. Part of it is the language. Everything the Lacks say is written in dialect. Words aren't misspelled to give the sense of their accents, but Skloot was specifically told, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves." [ix] The phrasing of the interviewees and the historical time is left intact, including constant use of the terms colored, Negro, and even nigger.
But mostly the difficulty comes from the simple fact that this is not a simple story. There is no mustache-twirling villain attacking the Lacks (at least not until the professional con artist shows up), but science itself - particularly applied to minorities before the 1990s - is full of them. Be prepared to be hit every other page with quotes such as "Black scientists and technicians... used cells from a black woman to help save the lives of millions of Americans... And they did so on the same campus - and at the very same time - that state officials were conducting the infamous Tuskegee syphilis studies." [97] Even the ones trying to be kind to the family are dismissive and tone-deaf at best, such as the researcher who agreed to meet Henrietta's daughter Deborah, but answered her questions by handing a woman with a 4th grade education his Medical Genetics textbook. "He said it would tell her everything she needed to know, then autographed the inside front cover. Beneath his signature he wrote a phone number and told her to use it for making appointments to give more blood." [188] Sometimes the problems are simply major miscommunications, such as when Dr. Hsu wanted to work with the family to get blood markers. Hsu was not overly fluent in English; what she did speak was extremely technical. So what the family says she told them and what she thought she told them were universes apart.
Frankly, going through that - reading about the advances and abuses, the lives saved and lives ruined, and most especially, what Henrietta's life and death meant to those who knew her - may be hard, but all the more reason to read this book.
A portion of the royalties go to the Henrietta Lacks Foundation, established to finally make Hela give back to the Lacks family. Johns Hopkins has also made a statement regarding the publication of the book.
The Immortal Life of Henrietta Lacks
author: Rebecca Skloot
Published: February 2, 2010
ISBN: 978-1-4000-5217-2
369 pages
List price: $26.00US/$32.00CAN In the US, on sale in stores such as Target for 30% off
All page numbers are from the American hardcover edition.
The review part is quite simple: Everybody needs to read this book.
Interested in the history of science? You need to read this book.
Interested in medical ethics? You REALLY need to read this book.
Interested in racial relations in America, circa the 50s and 60s? You need to read this book.
Interested in depictions of class and racial privilege in modern America? This is your textbook.
Interested in the state of health care in America? You need to read this book.
Interested in reading about "a decadelong [sic] adventure through scientific laboratories, hospitals, and mental institutions, with a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist" [6]? You need to read this book. (Skloot doesn't add "Supreme Court appeals, consent laws, the Nuremberg Trials, treatment of the profoundly disabled, the Bromo Seltzer Tower and even 9/11" - but they all play a part too.)
The basic story is this: In 1951, Henrietta Lacks went to Johns Hopkins Hospital for the treatment of cervical cancer. The surgeon on duty biopsied the tumor before treatment and sent the cells to George Gey, who was experimenting with cell cultures, attempting to find a stable line.
The tumor cells were hardy beyond his wildest dreams. "HeLa" was the first immortal, stable, mass-producible cell line ever created, and the foundation of almost all cell research since. HeLa "factories" started as early as 1952 for use in developing the polio vaccine.
But nobody had ever asked Henrietta for permission. Nobody ever told her family - sharecroppers still living in their grandfather's slave shack - what was happening and why they kept getting called in to see doctors. White doctors. Eventually they found out *exactly* how important she was - and wanted to know "If our mother so important to science, why can't we get health insurance?" [168]
A lot of articles have told the story of the Hela cells; how they've been used, how they've been abused, even how they famously almost ended cell research by contaminating cell lines (all covered by Skloot), sometimes using the family for human interest background. Skloot sets out to tell the story of Henrietta and her family, interspersed with a basic history of cell research and ethical issues thereof. Her reporting on the human side is minutely detailed, working hard to portray the personalities involved - for example, the famous Hela cells almost died immediately after biopsy because the discouraged lab tech wanted to finish her tuna fish sandwich, "tired of having cells die after hours of work" [35]. It doesn't flinch from darker details too, such as how Henrietta became Hela and then was erased from history under the name Helen Lane. Sometimes she goes into details Skloot didn't intend to pass on, such as her own attitudes. Occasionally the extreme detail robs dignity that didn't need to be robbed. But mostly, she's a white woman working on a story about an exploited black family, and while she made friends with all members that she could and read up on the history of maltreatment of people of color being used as research subjects, she just never applies this to her own actions. The go-to word these days is "privilege," but "clueless" also applies, as does good old-fashioned "rude!" "I started calling Deborah, her brothers, and her father daily, but they didn't answer" [54]; "I... paged Sonny every few minutes" [67]. And that's just from the early pages. You'd think an intelligent woman, even one determined to get a story worth telling, would get a clue after lines like "Brother gets mad when white folks come askin [sic] about our mother." [159]
This is not an easy read. Part of it is the language. Everything the Lacks say is written in dialect. Words aren't misspelled to give the sense of their accents, but Skloot was specifically told, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves." [ix] The phrasing of the interviewees and the historical time is left intact, including constant use of the terms colored, Negro, and even nigger.
But mostly the difficulty comes from the simple fact that this is not a simple story. There is no mustache-twirling villain attacking the Lacks (at least not until the professional con artist shows up), but science itself - particularly applied to minorities before the 1990s - is full of them. Be prepared to be hit every other page with quotes such as "Black scientists and technicians... used cells from a black woman to help save the lives of millions of Americans... And they did so on the same campus - and at the very same time - that state officials were conducting the infamous Tuskegee syphilis studies." [97] Even the ones trying to be kind to the family are dismissive and tone-deaf at best, such as the researcher who agreed to meet Henrietta's daughter Deborah, but answered her questions by handing a woman with a 4th grade education his Medical Genetics textbook. "He said it would tell her everything she needed to know, then autographed the inside front cover. Beneath his signature he wrote a phone number and told her to use it for making appointments to give more blood." [188] Sometimes the problems are simply major miscommunications, such as when Dr. Hsu wanted to work with the family to get blood markers. Hsu was not overly fluent in English; what she did speak was extremely technical. So what the family says she told them and what she thought she told them were universes apart.
Frankly, going through that - reading about the advances and abuses, the lives saved and lives ruined, and most especially, what Henrietta's life and death meant to those who knew her - may be hard, but all the more reason to read this book.
A portion of the royalties go to the Henrietta Lacks Foundation, established to finally make Hela give back to the Lacks family. Johns Hopkins has also made a statement regarding the publication of the book.