Our buddy read for the month of March was The Immortal Life of Henrietta Lacks by Rebecca Skloot. One of my friends whose husband is a scientist recommended this book and Ariel and I decided to read it together. Let’s take a look at the synopsis and content notes before we dive in!
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her enslaved ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.
Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia — a land of wooden quarters for enslaved people, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.
Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family — past and present — is inextricably connected to the history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Content Notes include Medical trauma, Cancer, Racism, Child abuse, Sexual assault, Domestic abuse, Incest.
The Immortal Life of Henrietta Lacks
Whole book Discussion
This is the first book where I have gotten a glimpse of what happens behind the doors of science. Stories about scientists such as Rosalind Franklin (Her Hidden Genius by Marie Benedict – review here) have centred around the life of the scientists themselves but what about the subjects, the patients, the donors who have made research possible? When I first heard of this book, I was intrigued and excited to learn about Henrietta. What I expected was a non-fiction about her and how her cells have since been used in various advances in science, but instead I got a lot more that I wasn’t mentally prepared to learn about related to people’s personal lives. Please note the content notes we have listed above before diving into this book. Ariel, what were your first thoughts when we decided to read this one together?
I thought this had the potential to be a really excellent follow-up to our last buddy read, When No One Was Watching, since there was an underlying theme of the history of the medical field preying on poor Black neighborhoods for medical experiments and other scientific research studies that did not involve the community’s informed consent. Hearing about a book describing the life and experiences of Henrietta Lacks, the Black woman whose cells were taken from her and used worldwide and even in space, could have tied nicely into our previous discussion.
Let’s start with Henrietta: Set in the 1950s when segregation was an everyday part of life, Henrietta goes to John Hopkins Hospital when she discovers a tumor. The doctors do not give her enough information and start treating her for cancer with radium. That was mind blowing to me. From books like Her Hidden Genius I knew the harmful effects of radiation on scientists but to read about it actually being used for treatment was devastating. I felt that the book portrayed the landscape of that time in detail and it was possible to see that the issues in Henrietta’ treatment had a lot to do with institutional structures and misguided practices.
Yes, the context of Henrietta’s tumor cells being the exact thing that a researcher was searching for in an era where informed consent was iffy at best creates a domino effect throughout the past 70 years where researchers and scientists in the medical field exchanged her cells before the field was set up to turn a profit. One thing this book did well was show how one thing leads to another in the medical field and suddenly Henrietta’s cells are all over the world and even in space without her family knowing.
Yes I agree with that! I never thought about that domino effect of discoveries but it makes perfect sense.
In between all this, I expected more of Henrietta’s story but as I got to know her in the first few chapters of the book, it became clear that there wasn’t a lot there. She was not even 30 years old when she died and a lot of what the book uncovers is about her family, origins and after she passes away. Though part of it was to bring awareness to how the family was exploited and never reimbursed for the success of Henrietta’s tumor cells, there were more things at play here than I wanted this book to cover. Scientifically, yes, I wanted dialogue questioning and exploring how the medical practice has evolved since, but I did not want an author intruding into a family’s life and exposing their deepest secrets to the readers.
It felt very ironic to me that, in a book that is very much about the lack of informed consent and the invasion of privacy, that the author (who is a white woman), felt like she had the authority to not only disclose a Black family’s deep personal trauma but also profit off of it in her own book. She states she will create a “scholarship fund” for the family, but that only comes across as her not trusting the family with the money she’s making off of their story. In addition, the family has experienced systemic and interpersonal trauma, and I was concerned that the author does not seem to protect their privacy at all. Not only that, but there are many times when the author inserts herself into the narrative and centers her feelings and her experiences, when that’s not what the book is about.
Reading this reminded me of when I read Evicted: Poverty and Profit in the American City, an ethnography where the author takes great lengths to avoid centering himself in the narrative, because he understands that this isn’t his story that he’s telling. Ultimately for this book to reach its full potential, it should have stayed far away from the family other than brief biological details, and focused more on the scientific and medical evolution of HeLa cells and other instances of lack of informed consent in the medical field.
Absolutely! A year or so ago, we read Educated by Tara Westover. That had been a non-fiction memoir about the author’s life and while it also covered difficult personal and family trauma, we knew it was the author’s choice to share and hence, we were able to understand her perspective.
Yes, and not only that, Tara’s trauma was central to her story. By the end of this book we were asking ourselves: “Whose story is this? Henrietta’s? Or Rebecca Skloot’s?”
Concluding Thoughts on The Immortal Life of Henrietta Lacks
Reading is something we do for pleasure but that does not mean we should not be critical in what we read. Based on our discussions of the book, here and in our private chats, it was surprising how many people have rated this book highly and yet not questioned these very concerning practices by the author. Reading critically takes a lot of energy but it enriches our discussions and provides us opportunities for our own research and learning.
Thanks for joining us today! Will you pick up this book?
Cover image: Photo by Josh Calabrese on Unsplash
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