Book club met last week to discuss The Immortal Life of Henrietta Lacks, and I wanted to post some thoughts on here about it. I would encourage anyone who enjoys strong character development, mystery, history, or medicine to read (or listen to) this book. I am not usually one to pick up non-fiction, preferring the world of make-believe to the real world, but this book proved the exception.
It is hard to summarize what this book is actually about because it weaves together multiple story lines and touches on so many profound issues. While ostensibly it is about the medical history of Henrietta Lacks who died of a virulent strain of cervical cancer at the age of 30, the author, Rebecca Skloot, carefully explores the lasting effects of one woman, gone too soon, on her children, her family, her community, and ultimately the world.
Samples of Henrietta's cancer cells were removed and cultured without her knowledge or consent prior to her cancer treatments. Those cells, known as HeLa, grew at a rate never seen before and are still widely used today in tissue research. They are responsible for the discovery of the polio vaccine as well as many other cancer treatments. They were the first human cells in space and were used to study everything from AIDS to nuclear bombs. And while Henrietta's impact on the scientific world is almost immeasurable, Skloot goes to great lengths to describe the profound loss felt by Henrietta's children at her untimely death, and the shock it was for them to discover that part of her was still alive. Henrietta's two youngest children, her daughter Deborah and her infant son Zakariyya, never knew their mother, and both of their lives were irrevocably shaped by her absence. Deborah struggled her whole life to find out the truth about her mother, ultimately befriending the author who helped her get some answers. Zakariyya ended up in prison, his entire life defined by the unspeakable abuse he suffered at the hand of the woman who raised him after his mother's death. Full of anger and violence, he killed a man, and after his release he drifted from job to job, spending a lot of time on the streets, alienated from his family and society.
The book also deftly handles the myriad ethical issues surrounding patient confidentiality, informed consent, and cell and tissue culture with a skilled and balanced hand, making the many facets of these complicated issues understandable to those without formal scientific training. I was appalled to learn about the medical experimentation that went on in this country post-Nuremburg without patient consent in the name of medical research and scientific progress. Surprisingly, even today, tissue discarded as medical waste during any kind of "-ectomy" can be used in research. The Supreme Court has ruled that medical waste can be used by researchers to further scientific progress and has shifted the balance of power from those who contribute the "raw materials" to those who develop it into a patentable or purchasable commodity. I was particularly struck by the complicated issues that arise when capitalism meets healthcare and how ill-equipped the free market is to handle such sensitive matters.
Well worth the read!
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