This is one of those books that you just can’t believe is really non-fiction. Amazing, intriguing, and shocking are just a few ways to describe it. The Amazing Life of Henrietta Lacks, by Rebecca Skloot, is about a woman who’s cancerous cells were taken from her, without her consent, and used in medical research for decades. In fact, it is very likely that they’re still being used.
Henrietta Lacks was a black woman who grew up in Clover, VA (Clover no longer exists) in the years when segregation was still the norm. In 1951, at the age of 30, she felt pain in her body so strongly that she felt it best to go to a doctor. During the course of one of her visits, a Dr. George Gey had some of her tumor removed, along with some healthy tissue. It should be noted that all this was done before informed consent was made law, when it was still considered ok for doctors to do as they pleased, especially when it came to “colored” people. It is questionable whether the treatment prescribed by Dr. Gey actually helped Henrietta, or accelerated her death, but she died on August 8, 1951, her body riddled with tumors.
Well, she died, but her cells continued to live. Her cancerous cells, that is. Her normal cells died soon thereafter, but, as up till now not been seen in science, her cancerous cells grew, got stronger, took over other cells. They were known by the name of HeLa, using the first two letters of Henrietta’s first and last names. Along with informed consent, patient confidentiality apparently wasn’t big at the time.
Soon, HeLa cells became world-famous and were being shipped to labs everywhere for various types of research. While the cells became famous, her family- husband, children, siblings- did not. They continued living in poverty, with hot so much as health insurance assistance from Johns Hopkins University (where Dr. Gey worked).
Several decades later, enter Rebecca Skloot, a 20-something who’s just found about about HeLa and Henrietta Lacks and has a fervent desire to get to the bottom of this story. Before Skloot can even begin her research, she has to persevere in getting Deborah Lacks– Henrietta’s only living daughter– to converse with her. It takes over a year, but Deborah finally opens up to Skloot, little by little.
The story is centered on Deborah’s journey to come to acceptance with her mother’s cells, and the discovery of what really happened to her own sister, Elsie. But it’s also about the rest of the Lacks clan coming to an understanding of HeLa.
It’s amazing to think that there was a time when patients’ rights weren’t even a thing. Even today, it’s questionable whether a person really has any claim to tissues taken from them. The doctor/researcher might use them for some studies, find out that they’re a cure for cancer, and then get rich immediately, yet the patient or kin might not even become aware that it was their own tissue that found this cure. Doesn’t seem right at all, does it? Even if there were no laws, I’d hope that doctors/scientists/researchers would be bound by some moral code of ethics to look out in the patient’s best interest. That sadly wasn’t the case for Henrietta Lacks.
This book is an amazing tale of the Lacks family’s journey to understand what was taken from them, how they can deal with it, and how to best honor Henrietta Lacks. I highly recommend you read this book. I bought this book from the local library’s booksale because it thought I’d heard about a movie with this title. So now I should go watch the movie while you go read this book!