I first saw The Immortal Life of Henrietta Lacks (2011) by Rebecca Skloot on my mother's nightstand. She's a librarian and often gets word of good books before me. So when I saw it again on the library's kindle page, I immediately put a hold on it.
I enjoy reading non-fiction because I like to learn new things and understand other people's lives. The Immortal Life of Henrietta Lacks is a fascinating book for a number of reasons. This book looks into the lives of a very poor, black family in the South, medical research, the development of cellular cultures, and the ethics of taking tissues from patients and the patients' right to be informed.
Henrietta Lacks is a poor, black woman, whose ancestors were slaves. When she was receiving treatment and dying of cervical cancer at Johns Hopkins in the 1950's, scientists took some of the cancerous cells from her tumour. These cells were the first cells that scientists were able to cultivate. Because of the cells' hardiness, they were used in countless experiments throughout the world. No one in the Lacks family gave permission for this and they did not learn of it until twenty years after her death. The revelation that their mother was spread all over the world affected her children deeply.
Skloot goes to great measures to stay as neutral as possible on her topic. She clearly tells how things happened and then lets the reader decide what to think. I was shocked a number of times at what occurred in this book, and I found the story of Henrietta Lacks' cells very interesting. However, I did not feel that Henrietta Lacks was really a victim of her doctors. The doctors did what they could with her cervical cancer, and she received what was probably standard care for that time. I did find the segregated hospital shocking. The hospital would label her blood as "colored." And Johns Hopkins was progressive! Most hospitals simply didn't treat black patients. I'm obviously familiar with the idea of segregation, but I guess I don't often realize how the reality of it affected every facet of life with its stupidity, unfairness, and waste. Anyway, taking some cells during a biopsy was the least of the wrongs done to her, and it did not affect the end of her life in any way. (However, the doctors should have been much more careful about the privacy of her identity and taken more care with letting the family know what was going on once everything became public. It seemed that one doctor just taking the time to show and explain how they were using Henrietta's cells made a huge difference.)
In fact, I was angrier at Henrietta Lacks' husband. Although there wasn't much detail about their relationship or their personal thoughts, I did learn that Henrietta was sweet on another guy when she became pregnant with her first cousin's (soon to be husband's) baby. They both lived with her grandfather. Her cousin was 19 and she was 14. She was never a fan of sex, although she continued to bear her husband's children while he cheated on her, bringing her syphilis and the HPV virus (which most likely caused her cervical cancer). Her dying request was that he take care of her children. Instead of fulfilling that request, he allowed his children to be both physically and sexually abused. I realize some of my judgment may be unfair because I do not know what he was going through or his struggle to keep the family going. This was also a very different time and culture from what I'm used to, and I assume a lot of his action, or inaction, stemmed from ignorance. They didn't even know back then about HPV--in fact, it was Henrietta's cells that helped with the discovery. I just wish he had taken some action to care about and protect his children and his wife.
Some of the most shocking parts of this story were the descriptions of some of the medical research done on the poor, the incarcerated, and people in mental institutions. In fact, one of the most heart wrenching tragedies of this story was that of Henrietta's oldest child, Ellie, who languished in a mental hospital after her mother's death. And yet another reason I hold some bitterness towards Henrietta's husband. The other theme that continued to resonate with me was how important knowledge and education were. Henrietta's family was struggling so hard and they had no idea of what was being done to them or how to make their lives better. It was sometimes hard to read.
The Immortal Life of Henrietta Lacks shines a spotlight on an important step in medical research and the family of the woman ultimately behind it. Although the story sometimes jumps around too much between the very personal friendships Skloot made while writing this book to various medical questions, it's worth reading.