This was the book the Gender & Women's Studies department chose for discussion for Women's History Month. Great choice, again! Henrietta Lacks died in 1951 of cervical cancer and doctors took cells from her tumor and were surprised that they grew and did not die off, like no other human cells to that point. They were named HeLa cells after the woman, and were grown and distributed throughout the world for medical research that has resulted in drugs for herpes, leukemia, polio and many other diseases.
Rebecca Skloot first heard of Henrietta Lacks in 1988, when she was 16, in a community college biology class, and was intrigued. Who was this Henrietta Lacks? No information was out there. As Rebecca went through college getting her biology degree, she kept searching for information on Henrietta. In graduate school she studied writing and kept thinking she wanted to write Henrietta's story. Eventually she spent more than 10 years researching the Lacks family and the scientific research around tissue samples that culminated in the publishing of this book.
The story itself is haunting - how an energetic poor black woman from the tobacco fields of Virginia moves to Baltimore, raises a family and dies young, leaving 5 kids behind to struggle without her. Meanwhile her cells take on a life of their own in the scientific laboratories, making careers and money for many along the way.
I am amazed by the perseverance of Skloot, her ability as a young white woman to earn the trust and respect of this black family, especially the daughter Deborah. I don't always read the acknowledgements, but this chapter was fascinating in an of itself. Skloot talked to hundreds of people, bout the Lacks' life and the scientific side of this book. She researched in libraries, archives, governmental, hospital, laboratory records. Sounds like dozens of people read the manuscript. When someone in the discussion group questioned the timeline in the book that is not quite linear, I realized this was thought about in depth and the decision was made to offer the story in the best way possible. It worked for me.
The big question that Skloot tackles is medical and research ethics. Back in 1951, there were no institutional review boards checking over research with humans. Research and its guidelines have evolved over these decades, but there are still many unanswered ethical questions about the use of human tissues - the rights of the donors - do they have a say how their tissues are used, for what kinds of research - and who gets to profit off of these tissues? Is the patenting of genes and tissues a good thing or does it encumber research? Skloot raises these questions throughout the book, but then spends the whole afterward pulling these issues together.
Very powerful book. It is being considered for first year experience as a common read book.
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