In The Immortal Life of Henrietta Lacks author Rebecca Skloot tells the story of Henrietta Lacks, an African-American woman who escaped an arduous life picking cotton – on the same farmland that her family worked as slaves – to move to Baltimore, Maryland. Though she had a troubled marriage to her first cousin, David Lacks, with whom she has been raised in the same one room cabin, she also had 5 children whom she loved dearly and a strong network of friends. Diagnosed with ovarian cancer at age 31 she was dead a short while later, and her cancer cells, taken and developed without permission, began a journey all over the world as they were used time and again to investigate the workings of disease and to develop vaccines/cures for a myriad of diseases like syphilis and polio.
Scientists had long been looking for cells that were capable of surviving and reproducing, and Henrietta’s cells were just about the only ones at the time capable of being cultured and grown. Laboratories growing and selling her cancer cells have made billions of dollars from providing the cells to scientists for research, while her family neither knew nor ever received compensation, and suffered a variety of illnesses without medical insurance.
I found The Immortal Life of Henrietta Lacks to be well researched and presented in such a way that made the science accessible to the average reader. This was always an engaging read even though I had a lot of mixed feeling not only about what went on with Henrietta’s cells, but with the treatment of the family, and even the author’s involvement and choices while bringing this story to light. Skloot’s examination of the ethics surrounding medicine at the time was detailed and informative. From what I learned, medical ethics could have been termed ambiguous at best, at worse, it was an extremely unenlightened time in medical and research history, and the way doctors and scientists went about administering treatment and conducting research were cold, invasive and in some cases a serious threat to the lives of their patients.
Skloot is to be commended for her impartial and compassionate coverage of the Lacks family. Henrietta grew up extremely poor, was often unsupervised as a child, and would become pregnant with her own first child before she was fifteen – by the same cousin whom she would later marry. Her daughter Deborah was daily threatened with sexual abuse for most of her middle grade and teenage years, and also had problems with dyslexia. An eventual teen pregnancy limited Deborah’s opportunities to obtain a complete education. I was often touched by her struggle to understand just exactly where her mother was, her fear at thinking that her mother was somehow alive somewhere, and being tortured in the experiments that were conducted on her cells.
Skloot ended up developing a relationship with the Lacks family as she was working on this project, and became particularly close to Henrietta’s daughter Deborah. While I don’t question the fact that Skloot cared deeply about the Lacks family, proved to be instrumental in getting information to them when no one else either would or could, and has given a fascinating and important part of medical history and Henrietta Lacks a voice, I couldn’t help but to feel troubled by the initial contacts that she made with the family. She details that she called them several times a week (sometimes as often as every day) over the course of a year in order to convince them to speak with her. If someone called me like that I would have considered it harassment.
We discussed this at my book club and some argued that it is a story that needed to be told, but I have to say that I have mixed feelings about the entire thing. At the time and for whatever the reason, the Lacks family didn’t want to discuss their mother and that painful history with anyone, and I think that was worth respecting. Skloot kept at them until a year later they gave in. I’m not sure what gave her the right to go after them so relentlessly because she wanted to tell that story, and why her feelings on the matter would have superseded theirs. Skloot also wondered if she pushed too hard, but usually only after witnessing the intense pain and illnesses Deborah suffered from worrying over the whole thing.
I had similar mixed feelings about journalism when I read Among the Thugs by Bill Buford. In the end we say that the ends justify the means, and while I am not convinced, I recognized that even though I read some parts with uneasiness, I learned a lot from and was deeply touched by this story of just one of the injustices in our history. Skloot skillfully sums up at the end with some thoughts on the current state of medical ethics, and if you think something like this can’t happen again, you would probably be wrong. As it currently stands anything that you leave behind in the doctors office- whether they draw blood, or you have your appendix out- is pretty much fair game since we don’t own tissues onec they are no longer a part of our body. Yikes! Things that definitely make you go… hmm!