Sunday, September 12, 2010
Read by Cassandra Campbell and Bahni Turpin
Random House Audio
This was an audio book that I listened to over a 2 week period. I usually have an audio book from the library in my car as I spend a significant amount of time driving alone especially in the summer. Most of the audio books I listen to are eminently forgettable but not this one! It was recommended by Jen at Devorer of Books (a great blog) as part of the Audio Book Week in June.
This book melds the two very different stories of the family of Henrietta Lacks, a poor African American woman, who died tragically at Johns Hopkins Hospital of an aggressive cervical cancer in 1951 and the story of her cancer cells (called HeLa cells) that were harvested from her tumor and used by medical researchers throughout the world for the next 50 years without the knowledge or permission of her family.
The author has done an extensive research job in putting together this book. The afterword notes that it took 10 years to complete the book. She did a great job. The science is easily understood by the average reader, the family story is enhanced by the author’s patient relationship with the family of Henrietta. The science side of the story is a history of medical/laboratory research in the 20th century told with the HeLa cells as the central player. The life of Henrietta and her family is a history of rural African Americans who migrate to the big city – Baltimore and all the problems that were part of that story. The author intertwines these stories in a masterful way.
Let me start with the science and medicine. I loved this part of the story. As a med tech that started working in the 1960s my career began at the end of this era. In the 1960s, the MDs were still gods almost never questioned by anyone, patient informed consent was totally unknown, reagent companies were in their infancy, lab techniques were far from standardized, medical conferences were often peppered with public fights between different research camps, mailing blood samples around the world in card board boxes was standard practice and there were remnants of racism in medical care. The reader is treated to detailed reviews of these topics and lots of others always tying the topic back to the HeLa cell cultures. I was further entertained in the story when it turned out I actually knew some of the medical folks from Fox Chase Cancer Institute and Johns Hopkins who played a part in this story (I actually almost drive off the road as I listened to the Hopkins section!). Learning of some of the dubious ethical studies that occurred in the 1950s, ‘60s and ‘70s gave me knew respect for the development of informed consent policies and the role of Institutional Review Boards in protecting patient rights.
The story of Henrietta Lacks and her family is gripping. While the HeLa cells were in wide use in laboratories throughout the world her family had no idea until 1975 that their mother’s cells had been harvested and continued to exist. Following their identification as the family of the HeLa cell donor they are harassed and besieged by reporters and other charlatans. The author in a skilled way shows the two very different versions of the same events told by the mostly white medical establishment and the poor black Lacks family. Henrietta had five children, only one of whom was old enough to have memories of her. The children were each haunted by the existence of these cells and the effects on them were different. Her daughter, Deborah is a central character in the story. Never really knowing her mother she searches for some aspect of her mother’s life in the cell culture story. Hampered by the lack of an education she slowly, with the author’s help, comes to know the impact that her mother’s cells have had in medicine. I was really moved by the growth that Deborah shows over the course of investigating these events. I was also moved by her lack of anger against the medical field and institutions that had treated her family with such wanton disregard. In the end for me, she was the most memorable character assuming a kind of goodness and dignity denied to her mother.
Lastly what I liked about this book is the way the author presented the story in a non judgmental way. Both the family and especially the medical establishment committed acts that did no one proud. She is not condescending nor patronizing to the Lacks family; she does not condemn the medical establishment. It would have been easy to sensationalize this story but she didn’t, she just calmly and in a very fair and straightforward way reported it.
This book tells a poignant human story surrounded by compelling medical science. Folks with no science background could and should read this book but it should be required reading for medical professionals. It is hard to believe that this was a debut book for Rebecca Skloot, here’s hoping for many more!