Many have read this book and written about it. It was #1 on the NY Times bestseller list and is recommended reading for those involved with bioethics and other ethical issues, physicians, researchers, etc. For those unfamiliar with it, the book tells the story of Henrietta Lacks (and her family), who unknowingly “contributed” the first “immortal” human cells to be grown outside the body. These cancerous cells became the foundational elements for many vital medical discoveries, while all the while Henrietta and her family knew nothing about what use her cells were being put to, had no health insurance themselves, nor received any acknowledgment of her role.
I come late to the discussion and you can certainly find and read the many reviews. Mine is more of a personal story as this book has stirred up a lot of thoughts and feelings for me. First, there are the race and class issues that are so strongly documented in this book by Rebecca Skloot. In ways that nothing else at least recently has done, I was taken back to my own childhood and youth growing up where racism was present and denied – taken as a norm. One might be tempted to say that this is no longer the case, were we not in the midst of what begins to look like another variation on the serious and ongoing racial conflict in the United States between “blacks” and “whites” that is now further exacerbated by the accessibility and prevalence of guns and the training afforded by ongoing wars that send young men to learn battle skills and break their hearts. But. I digress. Perhaps. The focus of this book is more about science and the ethical issues inherent in studying human subjects, as well as of ownership of human tissues, than it is about guns and violence. But one could easily argue that great injustice – a form of social violence – was perpetrated on this, and many other, African American families in regards to understanding, respect, and equitable health care.
There are the science issues, as well as some moral and ethical ones, that can seemingly be divorced from culture and class. And yet, assumptions were made over and over again regarding the Lacks’ ability to understand the illness that Henrietta was experiencing (she had cervical cancer), the options for her treatment, or anyone in the family’s ability to “consent” to subsequent research on her cells. Consider the fact that it didn’t even seem to occur to a leading genetic researcher that Deborah Lacks (or most of us, for that matter) couldn’t understand the textbook, Medical Genetics, he had edited and had handed to her in response to her terrified questions about what they were doing with her mother’s cells (Skloot, 2010, p. 188). Or that it would mean anything to her that he autographed it!
I was also astonished to read that it was still true as of the publication date of this book, that multimillion dollar companies “harvest”, from renowned medical centers and hospitals such as the Beth Israel Deaconess Medical Center and Duke University (to name just a few) with patients all unknowing of what might actually be done with the pathological specimens they’ve had removed. The tissue-supply companies have a “deal” with these hospitals for an unknown sum (Skloot, 2009, p. 322) to supply them with “samples”. A Nobel Prize-winning researcher is quoted as saying, “Whether you think the commercialization of medical research is good or bad depends on how into capitalism you are (Skloot, 2009, p. 325). As recently as 2014, a case in Canada determined that the hospital owned the tissue it had removed from you. This is a complex bioethical issue about which most of us are uninformed, even if we have signed numerous informed consent forms.
The Lacks’ were living in a different world, as we all were, in 1974. As I traced Henrietta’s story through Skloot’s research, I was brought back to the reality that I was equally clueless as a young person about race issues and only marginally more so about class. I remember an incident with a friend who was in first grade with me who lived on the next street over. We rode the bus together and I asked if she could get off at my stop and stay and play as had happened before with other friends. My mother seemed stunned and maybe even frightened. While the issue was couched in the fact that we needed my friend’s parents’ permission and that she likely wouldn’t be comfortable at our house, I could sense that there was something more. I had no idea what the obstacles could be so I pressed on. Why wouldn’t she be comfortable? Why couldn’t we just ask for permission? My mother intimated that “her people” (they were from the Cape Verdean islands and poor) were different than ours. I continued to argue as it seemed to me that we were pretty poor and that lots of the kids in my class had families from different places. It was a time when the decision about our disagreements landed on my mother’s side. And was perhaps the first time that I was openly face to face with race and class divides in our town, although I was privileged enough that I had no name for, or understanding of, either.
As to the philosophical, ethical, moral, and even spiritual issues: What does it mean to be immortal? Do we own our cells? What is our responsibility to future generations? To science? Who can ethically make money on our biology? On biology in general? Who “owns” biology? I have often thought about this issue in terms of women’s rights; in terms of Monsanto and the ownership of seeds. Henrietta’s family – and Henrietta herself had insufficient education to ever be able to give “informed consent” – for an article about them, for a medical procedure, for almost anything. And I seriously doubt that anyone involved in this story would have acted in the same ways that they did were the woman and family involved white, privileged, and wealthy.
And then, of course, my close reading and emotions regarding this book are connected to the fact that Henrietta had cervical cancer, as did my sister Christine. Both dying young and quickly. Though not so quickly that they, and the families, did not suffer. Henrietta reminded me over and over again of Christine. She carried on with her life despite fear, and pain, and the specter of death, and the confusing and ongoing engagement with the medical community. These were the people upon whom we placed our hope and trust. We knew that they knew more than we did about the progression of the disease, and the potentials for treatments. Even though we were educated and well-read – unlike Henrietta and her family – we were lost at sea in the face of the seemingly life and death choices we were called upon to make.
One of my most poignant memories was driving with Christine on Route 128 outside of Boston on our way to Brigham and Women’s Hospital for yet another treatment, when she asked me if I thought she should go ahead with palliative surgery for her jaw. While it was offered as palliative, and therefore not curative, our hopes were for longer life. But how long? What was the balance between the suffering of the treatment and the suffering of the disease? How could we measure this? Were our choices any more helpful or informed than Henrietta’s? We were both weeping our love for one another as the cars sped by and we made the turnoff for Milton and Route 28 – a road we had ridden when we were small children for pleasure not for pain. And one we rode again when our father was having experimental, and ultimately unsuccessful, corneal transplant surgery at Massachusetts Eye and Ear Infirmary.
We seem to be constantly tracing and retracing our history – both individually and collectively. How can we better human life (as science and medicine both claim as a goal) without harm – intended or incidental? How do we bridge the gap between the specialists and those who face life and death choices even specialists are wary of making? [I would recommend another book related to these issues, written by surgeon Atul Gawande, Being Mortal: Medicine and What Matters in the End, which Nicky and I have both now read and continues to engender ongoing fertile conversation in our days].
And I believe it is important to consider who currently holds the power in relationship to questions about humans, other than humans, and life itself, on the planet – the one percent or the 99? Or is it held in some entity without soul – some corporation granted the personhood, the citizenship, the respect that many humans to this day are not? We race to keep up with our day-to-day lives while the decisions and policies that govern them go unchallenged or unnoticed. Once again, I see that I need to wake up and to stay awake. In reading this book I had this vague memory of hearing about HeLa cells from my experience in science classes in school and university, and in later work in a medical laboratory, but I realized that I related to this information unquestioningly. I was perhaps, more alert to the subtleties of ethical issues at age seven when challenging my mother about my friend’s visit than I have often been at other times of my adult life. I hand on this book and these thoughts to others, and am opening the doors for myself to questions and information that will help inform my thoughts and actions in the future.