There has been a lot of buzz around the AAAS Education Programs department (where SB&F resides) regarding the new book about Henrietta Lack’s interesting and important life and legacy. (The Immortal Life of Henrietta Lacks written by Rebecca Skloot, Crown Publishing, 2010) So much interest in fact that our very own Dr. Shirley Malcom happily agreed to write a review of the book for SB&F. The enthusiasm of Dr. Malcom and others in our department for this book has inspired us to create SB&F Book Club guides for other important, engaging science books for general readers. We hope that these guides can serve as a tool and encourage book clubs all over the nation to choose a science book to read and discuss in their club. As the old saying goes, truth is stranger than fiction, so why not add a little excitement to your book club with a nonfiction science book. The first five SB&F Book Club guides will be posted online in June.
Apparently we are not the only ones excited and inspired by this book. According Variety, Oprah and Alan Ball have teamed up with HBO to create the film version of the book. This announcement is further proof of the importance of this story being told.
In the meantime, please read Dr. Malcom’s insightful review of The Immortal Life of Henrietta Lacks by Rebecca Skloot.
I had read an earlier article about Henrietta Lacks, so I did not come to Rebecca Skloot’s new book completely unaware of the story. But The Immortal Life of Henrietta Lacks provides much more of the context and complexity behind “the facts” that it demands attention. It drives the reader in the same way as a mystery story, where one can’t wait to see “who done it.”
Skloot tells the story of Henrietta Lacks as well as the story of HeLa cell line, commanding us to see the human connections between the two. The facts are straightforward. In 1951 Lacks, an African American women in her early 30’s living in Baltimore, is diagnosed with an extremely aggressive form of cervical cancer. A sample of her tumor is taken in biopsy and passed on without her knowledge or permission and gives rise to the immortal HeLa cell line, the first successful tissue culture. HeLa then becomes an integral component of the story of a host of “medical miracles,” serving, for example, in the testing of polio vaccine. The doctor at Johns Hopkins who took the cells and the researcher who received them and passed them on to colleagues did nothing illegal, given that there were not yet the protections of patients’ rights and requirements for informed consent that exist today. He did not sell the samples, but gave them away, in the interest of medical science; he also benefited reputationally through the complex networking with colleagues. The issue of whether they were his to give is another matter entirely, as is the issue of the dollars made by companies that later emerged that did profit from their distribution.
Meanwhile Skloot leads us through Henrietta’s life story, a story of the migration from farm community to urban center in search of a better life and more opportunities. We are helped to see how a weak background in science coupled with communications failure on the part of the medical research community frustrated efforts by her family to understand how their deceased wife and mother was still alive.
For me this book is an excellent point of entry to discuss some very difficult social and ethical topics: the place of race in 1950’s America in structuring opportunity; the responsibilities of scientists and medical professionals to communicate clearly to patients and the public; the fear of the medical establishment by some in the African American community in light of examples of medical experimentation; profiting from “body parts,” where genetic materials, tissues or organs and so on. This book is also the basis for discussing some fascinating science that was at the base of the 2009 Nobel Prize for Physiology or Medicine —the role of telomeres in the life and death of cells.
Working at AAAS, and devoting a good deal of our time and attention to making science accessible to “regular folks,” I was reinforced in my beliefs that there is an audience for this work, people who, like Henrietta’s children, only wanted to understand, people who were willing to do the work needed to understand, and to meet the scientific community half way. I have been recommending Skloot’s book to everyone I know. I want them to “hurry up and finish” so that we can talk about the issues that it forces us to explore. – Dr. Shirley Malcom, Director, Head, Education and Human Resources Programs, AAAS, Washington, DC
27 May 2010 11:09 AM