A Life Both Wasted and Immortal
(Note: This book contains adults themes such as child abuse, incest, and venereal disease in a factual telling of a family’s history. These themes are neither detailed or glorified.)
I first heard about Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, in an episode of RadioLab, a science program that is broadcast on public radio stations, and is also available in podcast form. (If you’ve never heard RadioLab, I highly recommend it.)
Henrietta Lacks was a very poor, uneducated African American woman who lived in the south. She was raised in a family of tobacco farmers, and for much of her childhood lived in the same “home-house” that her family had lived in as slaves. She was, quite literally, born on the dirt floor of that home.
Although Henrietta Lacks died in 1951, she had what may have been the greatest influence on science of any woman who has lived. And, this happened without her knowledge or consent.
In the years surrounding Henrietta’s death, there was a tremendous push in the biological sciences to grow human cells for the purpose of experimentation. Reading about the early attempts is fascinating. It sounds like a cross between cooking and Dr. Frankenstein’s lab. Researchers visited farms to kill chickens and drain their blood to create experimental growing mediums. They invented machines to churn the liquids, bathing cells in nutrients. And, despite their efforts, nothing was growing.
Henrietta died of an especially virulent cervical cancer. Tissues from the biopsy of her tumor were cultured, and to everyone’s surprise, these cells grew. In fact, they grew and grew. The cell line, named HeLa (for Henrietta Lacks) was distributed to scientists all over the world. They were used to develop vaccines, cure diseases, test atomic blasts. HeLa cells traveled into space to help determine the effects of space travel on humans.
It sounds like a simple and heart-warming story. But it’s so much more complex than that, and at times it is shocking and horrifying. It describes the culture clash between the Lacks family and the scientific community, which was then largely male and white. It’s a documentary about the changes in what constitutes informed legal consent. And, it’s also a documentary about biological patenting and tissue cultivation for profit..
Skloot’s book is a reporting tour de force. Over the course of years, she extensively researched every facet and detail of the story. The book is both factual and emotional. It is a story of science and a story about the long-term effects on the Lacks family, who only became aware that Henrietta’s cells were still living all over the globe many years after her death and burial in an unmarked grave.
At the heart of the story is Johns Hopkins Medical Center and the book highlights the distrust the surrounding black community had for the hospital that was built, philanthropically, to serve its interests. This distrust was rooted in the African American stories about “night doctors,” who kidnapped black victims for medical experiments. Unfortunately, as I learned in my reading, there is truth in these stories – both in the mistreatment of blacks at the hands of experimenting doctors, but also in horror stories used to frighten slaves into submission. In fact, the idea of “night doctors,” who crept around at night dressed in white, looking to steal and torture African Americans, gave rise to the Klu Klux Klan.
The horror stories continue as Skloot and Henrietta’s daughter, Deborah, attempt to find out what became of Henrietta’s mentally retarded daughter – a sister Deborah never knew she had – consigned to an institution at her mother’s death – a place that is revealed as so gothic and gruesome, it makes the tales of “night doctors” seem tame.
In this way, the book is a socio-cultural history as well, told through the Lacks family, an ill-fated group born in poverty, inbred though marriage with close relatives and afflicted with congenital syphilis. Skloot manages to get to know them well enough to tell their stories with warmth and caring, while maintaining a reporter’s detachment.
The book is also a powerful overview of the state of tissue-based research, and the controversies around permission and profit, in an ever-changing scientific environment.
The book is riveting. It would be appreciated by anyone interested in biological science, the history of African Americans in the United States, or the politics of research for profit using human tissues – an issue that ultimately affects almost everyone.