The Immortal Life of Henrietta Lacks by Rebecca Skloot
My rating: 5 of 5 stars
On April 23, 2012, I will be giving away 20 copies of this book as a part of World Book Night in Detroit.
In order to be better able to "sell" the book (aka, convince people to take a free book from me), I bought a copy and read it. I started the book yesterday afternoon and I finished it today--before noon.
There is very little that I can say about this book that has not already been said. It is tragic, and hopeful, and incredibly painful. I cried as I read about Henrietta Lacks' death. I found the struggles of her children heart-wrenching as well.
Skloot explains that she originally wanted to tell the story of Henrietta Lacks, in part because so little was known about her as a person--despite all of the knowledge about the HeLa cells, grown from slices of her cervical tumor. In her effort to learn about Lacks, Skloot contacted a professor that had access to the family. After long, continued effort, Skloot managed to meet and speak with Henrietta Lacks' surviving children. They had been continually abused by the medical community (even having their genetic profiles published in a medical journal without their permission in the 70s), and it was a difficult task to gain their trust. In the process, this book shifted and changed. Originally about Henrietta and the HeLa cells alone, instead it became a book about the Lacks family and the use of tissue cultures in scientific research. Henrietta's surviving daughter, Deborah, specifically wanted the book to be about Henrietta and her older sister, Elsie, who died at 15 in an institution for insane African American patients. (Elsie was not insane--her exact diagnosis remains unknown, but she most likely suffered from a combination of deafness and developmental mental problems.) This also became a book about Deborah and her struggle to understand her mother's role in modern science.
This is a moving, difficult book about a complex situation and a series of ethical mistakes. I highly recommend it to anyone, but especially to those entering the medical field. We must remember the ethical failures of our past so that, just like every important lesson, we don't repeat them.
If there is one final lesson that I think this book teaches, it is that we cannot have such a thing as "informed consent" if don't have an informed population.
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