Looking for your next book?
Look no further than “The Immortal Life of Henrietta Lacks” by award-winning science writer Rebecca Skloot. This is a great read that does several things well:
It weaves together intimate stories with big-picture history, it presents different perspectives on cell culture and bioethics, and it entertains as well as informs.
About the book
From the author’s website:
“Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.
“The Immortal Life of Henrietta Lacks tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew. It’s a story inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we’re made of.”
If that doesn’t get your interest, here are the three reasons why I recommend it:
1. Weaves together intimate stories with big-picture history
This is as much a story about Henrietta’s daughter Deborah Lacks as it is about Henrietta’s cells. Over the course of her life, Deborah struggled against many burdens, including an abusive stepmother, lecherous male relatives, and a smooth-talking con man. She faced teenage pregnancies and two failed marriages. She had little formal education but had a swarm of medical and mental illnesses. Yet Deborah persevered through all of those challenges, determined to improve herself and the lot of her family.
During the early 2000s, a 60-something Deborah met a 20-something Rebecca Skloot and worked with her to learn about and share the story of the mother she never knew. Through that journey, she created a bond with Skloot, who she proudly referred to as “my reporter.” For me, this growing friendship was the heart of the story, and I felt very connected to the historical events that made Henrietta’s contribution so important and so complex.
Still, even without Deborah’s story, the historical events that unfold will pull you in. A major arc of the book follows the development of cell culture, which is the science by which cells are grown under controlled conditions. As a student, learning about the history of such an important tool and its applications to medicine will help you to appreciate the wonders of modern healthcare. It’s fascinating to learn about how Henrietta’s cells became the world’s first immortal cell line (unlike most other cells, they live and grow continuously in culture), and how scientists used those cells to address a number of important biomedical challenges.
At the same time, it’s important to learn about how cell culture both affected and was affected by evolving thinking in ethics. Although the book certainly acknowledges and explores the role of racism in medicine and society, Skloot seems more focused on different questions: the issue of patients’ informed consent in research, and question of whether patients may control the stuff they’re made of once that stuff is no longer a part of them.
2. Presents different perspectives on cell culture and bioethics
There are no easy answers to be had regarding the bioethical questions surrounding HeLa; in her book’s afterword, Skloot reviews key issues that persist today. For example, she informs you of the enormous number of tissue samples stored across the world. She also observes the conflict at the intersection of three priorities: pure science, which may benefit many people but which needs funding; commercial interests that may provide funding but often seek to limit access to innovation; and the individual patients who are the source of the tissues, who usually do not understand the potential value of that material, and who typically cannot develop that value without help.
Since the book was published in 2010, bioethical questions regarding Henrietta’s cells have persisted. For example, in 2013, after a team of European researchers published and then retracted the HeLa cell genome sequence, National Institutes of Health director Francis Collins met with the Lacks family and came to an agreement:
“In the end, the family decided that it wanted the data to be available under a restricted-access system similar to the NIH dbGaP database, which links individuals’ genetic make-up to traits and diseases. Researchers would apply for permission to acquire the data and agree to use them for biomedical research only, and would not contact Lacks family members. A committee that includes family members will handle requests, and papers that use the data will recognize Henrietta Lacks and her kin.” (Callaway, 2013)
3. Entertains as well as informs
This book brings the feels. Many parts of the story may be difficult to read, such as the abuse that members of the Lacks family suffer, or the horrifying treatment of black people in the name of public health. Other parts are endearing, such as the growing closeness between Skloot and Deborah. Still others seem nearly unbelievable, such as the faith healing that relieves Deborah of the burden of worrying constantly about her mother’s cells. Finally, there are a few laughs to be had–the antics of Deborah’s grandsons or the multibillion-dollar lawsuits filed by Sir Lord Keenan Kester Cofield.
Skloot, Rebecca, Cassandra Campbell, and Bahni Turpin. The Immortal Life of Henrietta Lacks. 2010. Sound recording.
Callaway, Eden. “Deal Done over HeLa Cell Line.” Nature News. Nature Publishing Group, 07 Aug. 2013. Web. 04 Apr. 2017.