Reposting this 2014 review because the Kindle Edition is on sale for $1.99
Summary: An excellent human interest, medical history, social commentary, practical ethics book with a story.
I cannot count how many people have suggested that I should read the Immortal Life of Henrietta Lacks. And after years of recommendations I finally picked up the audiobook from the library.
This is an excellent book in every way. The science is well presented. The ethical questions are presented well without being didactic. The care for the family, without minimizing their real problems or excusing them because of their problems is done well.
Henrietta Lacks was a poor African American woman in Baltimore. Much of her difficult life she had worked as a tobacco farmer but had moved with her Husband (who was also her cousin) to Baltimore for work. When she was not even 30 years old, a very aggressive form of cervical cancer, later found to be influenced or caused by Human Pathlova Virus, prompted her to go to John Hopkins Hospital. Being 1951, she had little options both because of racial issues and income. Her doctor was working on trying to create human cell cultures and took a portion of her cancerous cells to the lab where they were cultured.
Up until this point human cells had not had an ongoing line for research purposes. But because of a particular mutation of the cells, Henrietta Lacks cells continued to grow and became the first immortal line of human cultured cells, the HeLa Cells. This allowed researchers to test for all types of things on human cells without actually needing to test live humans. One of the first major uses was using the cells to test the efficacy of the polio vaccine.
The use of the cells have been one of the most important things to happen in medicine in the 20th century and more than 30,000 research papers have been published using the research around the cells and continue to be published at a rate of 300 papers a month.
At the same time, Henrietta’s husband and five children continued without her. All of her children really were too young to remember her well and most did not remember her at all. And so the book also tells the story of the crushing poverty of their lives, the very serious abuse of the children at the hands of those that were supposed to be caring for them, the significant mental health, physical health and justices issues that they all had to endure. The reality is that no one would really care about these kids if their mother had not accidentally contributed to medical history. Their story is not that unusual for many that grew up in the early civil rights era with poor education, few job prospects and little care.
But it is the family the really makes the story gripping. The family had no idea about the medical significance of their mother. It wasn’t until 20 years later when the research teams needed family DNA that the family even heard that their mother’s cells were being used medically. And because of their own poor education and lack of communication from the researchers they still did not really understand what was going on.
I will not reveal too much of the story, but Rebecca Skloot becomes not only a writer about the family, but a friend, an educator, an advocate and in the end a benefactor to the descendants of Henrietta to help them go to school.
One of the best things about The Emperor of All Maladies: Cancer: A Biography, that I read earlier this year, was that the author used the story of cancer to tell the broader story of medicine, research and ethics. The Immortal Life of Henrietta Lacks does much the same telling a shorter historical story (since 1950) but one that is still about the history and changes in medicine, the changes in ethics around research and to a lesser extent, the problems that poor have accessing medical care.
The audiobook was very well read and includes a nearly hour long interview with the author about how the book has been received and follow up to information in the book. It is books like this that I think more people that shy away from non-fiction should pick up. Because while it is a non-fiction book that is all about education, it is also all about telling a story. And Rebecca Skloot is a good story teller.
The one question that I have that never was answered but for me came up early in the book, was why cancerous cells (because it is only a cancerous cell that would continue to grow as this cell line does) can be used for research when most human cells are not cancerous. That was never discussed and I kept wondering throughout the book. It would seem (and my science sucks, so I am not a good person to be speculating) that at least some research projects would be problematic because the cancerous cells would react differently from non-cancerous cells. But much smarter people than me are responsible for doing to research so I am sure they have figure out how to deal with that problem. I just wish it was answered in the book.