The Immortal Life of Henrietta Lacks by Rebecca Skloot
Published by: Crown Publishing Group
Published on: February 2, 2010
Genre(s): Biography, Science, Nonfiction, African American Nonfiction
HB&W Rating: 5 Stars
Buy on Amazon: Paperback; Kindle
Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent.
Wow. Just…wow. After reading this, allowing myself a few weeks to process everything, “wow” is still the best I can do. There’s so much to say about this book, but I hardly know where to start. Anything I say can only be insufficient at best.
That said, let me start by saying that this book is probably one of the most gripping nonfiction books I have ever read. Told in a journalistic style merged with memoir, it focuses on ethics in medical research (more specifically, the lack thereof), the science behind it, and the exploitation of a race to foster it. For all the science that is included in the book, it is well-explained and the book reads like a novel.
The book centers around the life of Henrietta Lacks, the cells taken from her cervix during an exam at Johns Hopkins in 1951, and her daughter Deborah’s search for information about a mother who died before she was old enough to remember her. Henrietta’s cells known to scientists and medical researchers around the world as HeLa cells, were pivotal in cultivating medicine as we know it today. Henrietta’s cells were crucial in producing a Polio vaccine, studying the effects of the atom bomb on human cells, cancer research, and lead to the discovery and fabrication of many of the medicines we use today. They were instrumental in making advances in gene mapping, cloning, and in vitro fertilization. HeLa cells have been bought and sold by the billions and started a multi-million dollar industry selling human biological materials, but yet Henrietta’s family are unable to afford health insurance and Henrietta herself lies in an unmarked grave, a footnote to medical history.
‘Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.’ [Deborah Lacks]
Henrietta’s family was unaware of the strides HeLa cells were making in the medical field. It wasn’t until decades after Henrietta’s death that they learned of it, only when scientists wanted to run tests on the cells of Henrietta’s husband and children, which they did WITHOUT their informed consent.
This book covers historical examples of the unethical practices of medical researchers on those who are not in a position to protest or do anything about it, from the prison inmates who were injected with cancer cells, to the Tuskegee Syphilis study, where hundreds of African American men were refused life-saving penicillin in order that the doctors could study the stages and effects of syphilis as it progressed, to the experiments on mental patients in Crownsville State Hospital asylum that involved drilling holes into the heads of patients to drain the fluid around their brains in order to get a better X-ray image. These are only the examples covered in this book, but the U.S. has a dark history of conducting these federally-funded types of experiments on the poor, imprisoned, mentally ill, and in particular, black people–the sort of experimentation associated with Nazi’s during World War II, occurring even up until the mid 1970s. I won’t get into that in the course of this book review, but if you find this topic of interest, there are several articles and books on the subject. You could start here, here, and here.
Along with the theme of ethics and informed consent comes the debate of who maintains ownership of biomedical materials taken from patients. Do Henrietta’s cells, since they were taken from her body, belong to Henrietta and her descendants and heirs? Or were her rights of ownership over those cells forfeited when she submitted herself to her cervical exam, whereby her “consent” for the study of her cells was inherent in order to test her for cancer? Common law remains unclear on this matter, though case law has a precedent to follow in the case of Moore v. Regents of The University of California, which ruled that a patient retains no ownership of biomedical materials and have no rights to profits from commercialization of those materials.
[Per Lori Andrews] ‘The Moore court’s concern was, if you give a person property rights in their tissues, it would slow down research because people might withhold access for money. But the Moore decision backfired–it just handed that commercial value to researchers.’ …the ruling didn’t prevent commercialization; it just took patients out of the equation and emboldened scientists to commodify tissues in increasing numbers….this makes scientists less likely to share samples and results, which slows research.
In closing, all I can say is that you need to read this book, if you haven’t already. You will learn something you didn’t know before, I’m sure. Much of what this book covers in medical research and ethics will surprise and astonish you, and leave you wondering what else our government and medical industry would prefer you to forget. But if we are ever to move forward, we can’t do it by pretending the bad parts didn’t happen. We need to shine a light on them and make sure those bad parts don’t become another example of history repeating itself.