Book Review: The Immortal Life of Henrietta Lacks
The Immortal Life of Henrietta Lacks
Crown, Feb 2010 384 Pages
I first learned about The Immortal Life of Henrietta Lacks through Women’s Voices For Change. Chris Lombardi reviewed the book, and interviewed the author. It piqued my curiosity: using the story of Henrietta and her family to tackle complex questions about medicine, scientific discovery and ethics.
In 1951, Johns Hopkins Medical Center was the only hospital in Baltimore that would treat black patients. Henrietta Lacks was treated there for aggressive cervical cancer. During her treatment, doctors took a biopsy of cells on her cervix. And took a few more tissue samples, for their own experimental use. Doctors didn’t tell Henrietta and her family they were doing this. One of the larger issues Skloot’s book addresses is the concept of informed consent. Ethical considerations between doctor and patient- confidentiality and communication that we might take for granted now, are relatively recent in standard medical practice.
Lacks’s cancer was aggressive- the tumors spread, and killed her. And that could have been the end of her story- a malignant disease, and a grieving family. But… scientists ran tests on the cells they’d biopsied. And they found that Henrietta Lacks’s cells would grow fast and much more easily than anything else they’d tried to culture in the lab before. HeLa cells became a focal point for all kinds of testing and medical advances, without the scientists knowing much about the woman they’d been taken from. And without Henrietta’s family knowing anything about the cells that had been taken.
When Lacks’ relatives found out, they were scared, outraged. Even as she explores the larger themes of scientific discovery and ethics that give Henrietta’s story greater context, Skloot focuses closely on the emotional impact on the Lacks family. As bits of information filter from the scientific world to the Lacks family, science gets misinterpreted, twisted into frightening fictions. So, part of the work Skloot has to do in getting close to the personal story, is undo the damage done by decades of misinformation and no information at all.
I wish this book had been written 10 or 15 years ago. In college, I took a fascinating medical anthropology course. The focus was on medical practice in social context, especially with regard to women and class. This book would have been a perfect fit for class discussion. It’s exactly the kind of investigative science writing I find most fascinating: medicine in its cultural contexts, the way scientific assumptions get shaped by the assumptions we take for granted as a society. Skloot does a decently clear job explaining the ways biologists are working with HeLa cells.
But, for all my fascination with a complex medical narrative- there’s a certain degree of sheer masochism in reading this. As interested as I am in the intersection of science and culture, reading about some of the treatments Henrietta went through, and the pain she was in was harrowing. I can be pretty squeamish about descriptions of medical procedures. So, reading some of what was done to Henrietta was harrowing. Obviously, both medical science and standards of ethics have improved since Henrietta was treated for cervical cancer- but those early chapters are not for the delicate sensibility. I might have stifled a few shrieks of disgust. They sewed vials of radioactive isotopes into her! They did procedures on her, in the name of treatment, that were painful and not all that well explained… and she was an obedient patient. Because she was a product of her time, she and her family never questioned the doctors’ edicts.
I wanted to scream for Henrietta the patient in pain. It was tough to read.
It was so viscerally scary for me to read about Henrietta’s hospitalizations that the things being done to her cells after the fact, felt much less harrowing. I was interested in the way the science worked, which Skloot did a good job of explaining. Some of the time spent with Lacks’s relatives was absolutely heartbreaking- that scientists could be putting HeLa cells to lucrative use, while her surviving family was barely scraping by between one personal tragedy and the next. Although making herself, a white, educated woman, a central perspective character in the story, makes for some uneasy power balances, Skloot treats the Lacks’ story with dignity and a certain amount of grace.