Monday, March 26, 2012

The Immortal Life of Henrietta Lacks

For the month of April, my book club decided to read "The Immortal Life of Henrietta Lacks" by Rebecca Sloot. I like to get my book club books from the library, and the waiting list at my local library was a mile long, so I put my name on right after our February meeting. Surprise! I moved through the list like lightning and had to go pick up the book in the second week of march (after delaying as long as I could before they'd give up the hold). I just finished reading it yesterday - it was a whirlwind!

For those unfamiliar with it, the book is the story of the first human cell line to ever be successfully reproduced in a lab. The cells were cancerous, and a small quantity of them were removed from Ms. Lacks' body without her knowledge or consent in Baltimore in the 1950s and then grown in the lab by scientists, who were amazed by what they saw. They called the cell line "HeLa," shortening her first and last names as was customary at the time, which has contributed substantially to all human cell-based research. Ms. Lacks was the mother of five children who were all very young when she died as a result of her cancer in the 1950s. The children, and the rest of her family, did not understand what had caused her death or have any knowledge that her cells were out there. This book also chronicles the development of the author's relationship with Ms. Lacks' descendants, as she tried to learn more about them and they tried to understand what had happened to the cells and why.

I really enjoyed this book. The writing was excellent and engaging. I'm not very interested or knowledgeable about science, and I didn't have any trouble following alone or finishing the book quickly. I thought the author did a good job of explaining to the Lacks family (and of course, to the reader as well) what different scientific concepts meant. I also thought the author did a good job of presenting some of the race and class issues present in the story, given that Ms. Lacks was an African-American woman of limited means seeking treatment at a hospital that treated "colored" people without hammering on it. In 2012, I know that segregation is wrong and can tell from the book that it probably had some impact on the way Ms. Lacks was treated by her doctors. I think that's the author's perspective as well, though she does a good job of presenting the facts rather than her argument. Show me, don't tell me! I also think that the humbleness of Ms. Lacks' life, and the extraordinary contribution made by those cells, are a wonderfully inspiring story. Although we usually mean characteristics of personality or spirit, this book is another reminder that humans achieve greatness based on what is inside them.

Most of the discussion of the legal and ethical implications of human tissue research are reserved for a section at the end of the book. There were times I was surprised that the author seemed to be letting those issues go while she was telling the two primary stories: the cell research and the family's experience. I was glad to see it all together at the end, and now recognize that it makes more sense to discuss the legal and ethical implications in their own narrative, with points and counterpoints. She quoted one expert in the field who pointed out that the law protects the rights of the doctors who drew the cells and discovered something, a well as a company that (with the doc's agreement) subsequently mass produces the discovery, but the person who provided the raw material has no rights at all. This commentator pointed out just how strange that is, and I agree. While I don't know what can be done to remedy the situation, that point is a critical take away for me. I think the difficulty of these circumstances is further heightened by the Lacks family today, many of whom had serious health problems when the book was written and lacked access to basic medical care because they did not have medical insurance. While I personally wouldn't be worried about earning money if my cells were something special, I would find it entirely unjust if I couldn't gain access to medication developed by using my cells because a pharmaceutical company owned them. This is one of the many thought-provoking questions I was left with. I would definitely recommend this book!

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