This is my first blog post in 7 months. I wish it was a little more exciting. I just finished this book and I wanted to get my scattered thoughts down because my memory is terrible and I did not want to forget the thoughts this book provoked in me. This isn’t a great book review in that, if you don’t already know what the book is about, I didn’t provide any summary. I also referenced people/things that someone who hasn’t read the book will have no idea about. Maybe I shouldn’t bill this as a book review at all, but rather a conversation starter with anyone who has read the book. Okay? Okay. Well, without further ado…
I’ve just finished “The Immortal Life of Henrietta Lacks,” a book I’ve been meaning to read for the past two years. It was worth at least some of the hype and brought up several points of consideration for me.
Obviously, the race and class factors that affected - and continue to affect - Henrietta Lacks and her family was a huge part of this story. It is one of the great ironies, driven home throughout the book, that HeLa cells have done so much for science and medicine and yet the Lacks family, most of whom are chronically ill, cannot afford health insurance. Honestly, (and as I type this, I realize how ignorant it probably makes me sound), perhaps it’s an urban/rural divide, or a middle class/lower class divide, or even a racial divide between myself and the Lackses, but when I read some of the descriptions of the people and the conditions in which they lived in this book, I felt like I was reading about the 1940’s. The fact that Clover, the tiny town where many of them grew up or lived, was simply bulldozed sometime in the 2000’s, blew my mind.
Because the author portrays the Lacks family so candidly, their lack of education comes across often. The fact that a scientist gave Deborah a biology textbook to explain her mother’s cells to her was laughable, but infuriating at the same time. Also laughable/infuriating was thinking about Deborah Googling HeLa in an Ambien-induced state and getting all kinds of wacky results and being unable to make sense of which items related to her mother and which ones didn’t. It did made my heart happy though, when the author emphasized that the later generations of Lackses are college-bound or striving for college.
It’s just sad and cruel because if the Lackses were really serious about suing someone regarding the HeLa cells, I don’t think they would have had the education (or the means) to go about it (though Deborah totally kicked ass on getting power-of-attorney over Elsie’s records). They couldn’t advocate for themselves and there was no one to advocate for them. It’s like everyone the Lackses ever came in contact with regarding the HeLa cells either used them or brushed them off. Enter Rebecca Skloot. When I first started the book, I thought the author was arrogant, inserting herself into the process at every opportunity. But I realize now that she was an integral part of this story (and that working on this project for ten years must have been a profound experience for her). The more you read about past reporters and scientists’ interactions with the family, the more Skloot grows on you. She was as honest as she could be about her intentions and she put up with ALOT (Deborah’s constant bipolar freakouts, for example) and stuck with the reporting through it all. She also did everything she could to help the Lacks family understand on a basic level how her mother’s cells were obtained and what they were used for. And she set up a memorial foundation! I was glad, in the end, that it seemed like the family finally got some peace of mind.
The final thing this book obviously wants its readers to think about - and I certainly did - is ethical research concerns. It’s hard to judge the scientists who first discovered HeLa cells and freely traded them without informed consent because what they were doing was standard practice at the time. Informed consent as a concept didn’t exist then and looking back on it with contemporary eyes is unfair. That being said, reading that there are still not really any measures in place to protect individuals from their tissues or other specimens being used for scientific purposes frightens me a little. On a personal level, I don’t mind if science or medicine uses any tissues, etc. they may have collected from me in the past 24 years or that they may collect in the next 24. But the principle makes me uneasy. I think it’s a greedy (and ignorant) person who would refuse the use of their tissues for possible commercial gain, but I do also generally believe people have the right TO KNOW things. Some of the scientists quoted in the Afterword of the book were urging people to set aside their personal feelings for the benefit science. I would challenge these scientists to make science and research more transparent to the public. Tissue culture doesn’t have to be a big, bad, scary thing. I think the not knowing is what makes it seem ominous. If you go in for a routine check-up and you think your samples are thrown out after they are processed, then you find out down the line that they weren’t, of course that is going to stir up feelings of confusion and distrust. People should be made aware that there is a possibility, however small or large, that a part of them might be used in scientific or medical research and in what ways it might be used. I think most sane, rational people would be happy to contribute.