Here's the next in the stream of nonfiction books about women that I have read: "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. Quick plot summary: In the 1950s, doctors take cancer cells from Henrietta Lacks, a poor black woman from Virginia, without her permission. Scientists are looking for cells that can grow in culture and won't die quickly. Lacks' cells don't die, they keep on growing, a breakthrough for biological research. Lacks dies, leaving five children behind, and her family doesn't find out her cells are being used extensively in research until 20 years later. They think about suing but ultimately don't see a penny of the money that has been made off Lacks' cells.
It's a great premise: the author takes a footnote in a biology textbook and literally writes a book on it. The book is about science, yes, but it's also about history, ethics, racism, and poverty. In the first part of the book the author jumps between two very different worlds: Henrietta Lacks' life of hardship and deprivation, culminating with her death from an acute case of cervical cancer, then to the 1950s Johns Hopkins research lab where scientist George Gey is looking for a breakthrough.
Skloot then goes into painstaking detail on the decisions regarding Lacks' cells and the handling of her medical records. In the process she brings up a slew of ethical questions. The scientists who took Lacks' cells were not acting improperly, according to the standards of the time. But as a massive industry developed around these "HeLa" cells, shouldn't the family have benefited from it in some way or, at the very least, been informed on what was taking place? The author also talks about the development of informed consent procedures, which weren't put in place until the 1970s, something I found shocking.
One thing I particularly liked was how Skloot doesn't shrink from describing the poverty of Lacks' relatives. She writes about visiting Lacks' elderly cousin in a two-room wood cabin in rural Clover, Virginia, and how she befriended Lacks' daughter, a woman with many psychological and health issues. It seems like poverty is really a key ingredient in this story: poverty means not having the resources to hire a lawyer, and it means not understanding enough of what's being done with your relative's cells to be able to protest.
"Quietly passionate" is how one reviewer describes this book. The details build up and at the end you are finally just enraged at how unfair this situation is for Henrietta Lacks' family.
UPDATE: Worth a look -- Rebecca Skloot's blog
Sunday, April 25, 2010
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1 comment:
I heard the story on NPR's Fresh Air. It was really interesting and sad.
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