I finished Rebecca Skloot’s The Immortal Life of Henrietta Lacks just last week and I was pleasantly surprised at how I felt about the book. I expected to trudge through another book about biology and science (not my favorites) because I was tangentially interested in the topic of medical ethics. But I was surprised to find how drawn I was to the human element of the story. Contrary to the title, much of the book takes place after the actual life of Henrietta Lacks… or does it?
Henrietta Lacks, an African-American woman who grew up in poverty in Baltimore, died in 1951. But part of her, specifically the cells taken from her cancerous tumor and cultured in labs by scientists all over the world, are still alive in 2017. It is this dichotomy of being that her family, as well as the reader, struggles to understand even years later.
Never before have I rooted for a journalist like I rooted for Rebecca Skloot. As a writer myself, I have a love/hate relationship with the urge to invade other peoples’ lives for the story that they have to tell. I understand it, even if it makes me squirm sometimes. The fact is, people are interesting and I love to hear their stories. I find myself wondering if others would react the same way that I did or if they would have different insights. Enter the squirmy feelings of sharing others’ stories, something intensely personal that can feel inauthentic if not done well. I started reading this book expecting the same of Rebecca. And at first, that’s exactly how I felt. I questioned her motives. I scoffed at her repeated attempts to get Henrietta’s family to give her any insight into their mother’s life. But reading The Immortal Life of Henrietta Lacks, I found myself feeling her highs (the first time Deborah and Zakariyya saw Henrietta’s cells!) as well as her lows (the often unpredictable reception she got from the Lacks family). Her narration of a largely scientific story was entirely human. Like the Lacks family, she felt a drive to learn about Henrietta’s life. Hers was a need not just to share the story, as I expected, but to honor the woman.
This was made all the more complicated by the invasion of privacy into Henrietta’s life when doctors collected her cells without obtaining her consent in the first place. Although a standard practice at the time (and it is crucial to remember that fact when reading Skloot’s account), it has since raised many questions about informed consent and medical research. What are the ethical ramifications of scientists using Henrietta’s cells without her consent? How has this decision impacted medicine today? An interesting fact included in the Afterword states that “storing blood and tissues for research did not legally require informed consent” due to the legal differentiation between human research and tissue research. I was surprised to learn that after all this time and objection, informed consent was still not required to conduct research on a person’s cells. I am curious to see what impact Skloot’s book and the awareness it has generated has on scientific practices and law.
As a whole, I enjoyed the book, both for the knowledge I gained about the medical community as well as the stories I read about the Lacks family. I would recommend this book as an interesting and somewhat scientific read, with a touching human element. It didn’t change my life and probably won’t end up on my top recommended reading list but it is a solid book written by a skilled and compassionate journalist– yes, they do exist! My hat goes off to Rebecca Skloot for her perseverance in getting Henrietta’s story and her personal touch in sharing it.
Questions to continue your discussion:
- How did race relations in Baltimore impact the process of Henrietta’s treatment and subsequent research conducted using her cells?
- How did education impact the same?
- How would you characterize the relationship between the Lacks family and the doctors at Johns Hopkins?
- What do you think would happen in today’s world? Are there any similar ethical dilemmas facing scientists or academics?
Read the New York Times’ Sunday Book Review here.
Goodreads reviews summary and review here.
Read the New York Times’ review of the HBO based-on-the-book (which was an account-of-real-life) movie here. If you have watched the movie, what did you think? Was it as true to the book and the book was to the real-life account? Leave your thoughts in the comments below!