This is a complicated review to write because there are so many aspects to this story worth commenting on. I appreciate the fine work Skloot did in structuring this book to make every aspect readable and comprehensible. Despite the science, long time frame and the many people involved, I never felt lost and the story was not disjointed. Each topic received its due consideration in the text, whether it be the science of growing cells in a laboratory, ethical questions related to scientific research, or the legal landscape around ownership of our body parts (even when not still attached to us) and consent to use of our body’s parts for research. Skloot didn’t attempt to tell readers how to think about any issue but ably presented the historical context and helped the reader understand how we, as a society, have matured in understanding these issues over the past seven decades.
Likewise, the people who are part of this story - Henrietta Lacks and her husband and five children, as well as the many scientists and others who played major and minor roles in the creation of the immortal line of Hela cells, the immortal life of Henrietta Lacks - the people, too, were given their humanity in the text. To the extent she was able, the full life of a person was shown and no individual was reduced to a role. Henrietta Lacks was more than a donor, more than a body from which cells were taken and she was more than a wife or a mother or a friend too. She was all those but first and foremost, she was a person - someone with an inner world, with a history - as was the doctor treating her cancer and the scientist who developed the method for keeping cells multiplying in a culture. Skloot takes the time to give readers the full picture of a life. It’s remarkable that so many people central to this story were still alive to share their memories firsthand.
Intersectionality is an oft used word these days when it comes to a person’s identity. My level of wealth, quality of education, race, physical health, age, gender - all have an impact on the life I am living and all impact how I make decisions about my life. They have informed my experience of the world, inform how I navigate the world. If I set a specific goal, I will need to take into account all of the above, to some extent, in making a plan of how to achieve that goal. All of the above will intersect to inform the goals I set for myself. Because this story covers so many decades, the reader witnesses how the intersectionality of all those aspects of a person can impact their decisions on how they approach their life. The reader sees this with Deborah Lacks and other family members central to this story, with George Gey, with Howard Jones, all of whom are ordinary people like most of us readers. They are not famous, are not household names (at least the people in the book were not at the time of writing) and it’s rare to see lives over a long period like that where ordinary people grow, have successes and failures, start families, have working lives and all those intersecting elements: level of wealth, quality of education, race, physical health, age, gender - all are forever informing decisions and shaping their lives to one extent or another. Intersectionality isn’t just a buzzword; it’s a fact and it’s what gives each of us our individuality.
There’s a lot of science in this book. I was pleased by how much I was able to pull up from memory storage in my brain of junior high and high school science classes. But much of the science employed in maintaining living cell lines, much less the application of those cells to creating treatments for disease, was far beyond my grasp. We live in a culture that reveres knowledge, learning, science because we believe that if we have more of that, all of mankind will be better off - scientific advances will make us (the collective us) safer, healthier, happier, or whatever. We will have made ever more progress in the biblical promise that mankind shall have dominion over all the earth so science is good, right?
But what about when it’s not good? When the methods for more science aren’t good? What about when a woman’s cells are taken for research without her knowledge? What about when a patient isn’t allowed to retain ownership, physical custody, of the body parts removed from them? As an aside, I have all my wisdom teeth - the dentist removed them while I was in college and I asked to keep them just as a quirk. Apparently that’s no longer allowed - a young acquaintance of mine requested her wisdom teeth and was told she couldn’t have them. No clear reason why, just that it was against the rules. And more egregious, what about scientific experiments on humans? The Tuskegee syphilis studies are well known, as is the Stanford prison experiment. Both those are relatively recent occurrences involving human subjects and they thankfully advanced the placement of guardrails around experiments involving human subjects. But I don’t think we’re out of the woods when it comes to that type of experimentation.
Henrietta Lacks had cancer cells taken from her body and used in an experiment. That experiment was successful, successful in that the cells continued to live and replicate. And that allowed for scientists to do many more experiments, experiments that have led to many, many medicinal treatments, preventions and sometimes cures for disease. And to hear her daughter, Deborah Lacks, tell it she is glad her mother’s cells have helped so many people. There should have been informed consent as to what was being taken and when and why. There should have been continued communication with the family over the years, especially in the ‘70s when scientists came to collect cells from the Lacks’ children. Communication even then was completely bungled about the whys, the purpose, the possibilities. They definitely thought they were being tested for cancer or even directly for the prevention of cancer in their family. Certainly the family was not made aware at that point that millions of dollars in profits were being generated by their family cell line and the cells being collected from them at that point, were critical to allowing those millions of dollars to keep flowing in.
Who is making money off of each of us today? What’s being siphoned off from us online? I think we’ve all clicked through an online terms of use, particularly for cookies, that says information is being collected to improve the user experience. To my reading, many of those are worded in a way that implies that my personal experience on that site will improve if I allow the information to be collected (if there’s even an option). As if the improvement will be immediate, the application molding itself to my needs. So that sounds OK. And even if it’s more generically being used to make the user experience better in a broader, societal sense, I’m not entirely opposed to that. But there is more happening with what has been siphoned off from me - it’s being monetized. It’s being bundled with other user information and sold. I don’t know what happens to my information long term, where it goes and what’s done with it. It might go to people developing things I personally would never support, things which I do not believe benefit humanity. I am starting to believe that often my agreement isn’t a fair trade. Others are handling me in ways I don’t agree with, profiting off me. I’m not sure where to draw that line, or even where regulations should draw that line. The collection now of biometrics throughout society makes these questions more urgent and more personal.
The story of Henrietta Lacks as told in this book sparked in me a lot of questions about what we can learn from history, from the Lacks family history, and apply to the present day. Very grateful that the Lacks family worked with Skloot to share this story and to share the whole of the family story. The chapter solely devoted to Henrietta’s daughter Elsie who was institutionalized as a child will stay with me forever. I’m so glad Deborah Lacks made the unearthing of Elsie Lacks’ history a condition of her cooperation with Skloot.
We humans can be so extraordinary - individually, in families. We can create beautiful community, live lives filled with grace. Henrietta Lacks by all accounts was one of those ordinary people who was filled with extraordinary grace and brought that to her community. I believe in the interconnectivity of all life and I believe that we all should be monumentally grateful that it was Henrietta Lacks’ cells that have had such a widespread impact on humankind.