- The Good: Vivid and personal story of ethics, race, and medicine
- The Bad: If you’re looking for a scientific history of HeLa, this isn’t for you
- The Literary: Reference the back for detailed timeline, notes, and index
In 1951, Henrietta Lacks, a thirty-one year-old black woman, died from a rapidly metastasizing cancer of her cervix. For years, doctors had unsuccessfully attempted to grow any type of human cells in the lab. A cultured a slice of Henrietta’s cancerous tissue changed everything. Today, her cells have become one of the most important tools in medical research, allowing advancements in cancer and vaccine research, as well as in vitro fertilization, cloning, and gene mapping.
HeLa is the most commonly used cell line in science, and while I as a scientist haven’t worked with them directly, I have read and referenced many articles and studies that do. As a student, I was aware of the HeLa cell line, and heard about the woman named Henrietta Lacks from whom they came, but this book transforms some interesting historical science tidbits into a story I won’t forget.
There are really two types of narratives in this book. First, an impartial account of Henrietta Lacks’ life and death, of what happened to her cells, how they changed the field of medical science since the 1950s, and a history of the science since. See the notes section in the back of the book for references by chapter. Second, the author chronicles her personal (and arguably unethical) attempts to make contact with Henrietta’s family, particularly her daughter Deborah. By the end of the book, the storylines converge, unexpectedly turning a science history into an emotional social commentary of medical consent and bioethics, as well as a portrait of the plight of the extremely poor and uneducated.
Henrietta grew up working the same tobacco fields as her slave ancestors. She only attended school for a few years, married her cousin, and had six children. When she started feeling something wrong inside her body, she traveled to the “colored” ward of Johns Hopkins Hospital. Back then, patients didn’t ask doctors questions, and doctors didn’t know how to talk to patients. There were rumors of experimentation on black people (which turn out to be horrifyingly true), so Henrietta did what she was told. She never knew the doctors took her cells.
Forty years later, her children discovered their mother’s cells were still alive and thriving. Henrietta’s children wondered in horror if their mother had been cloned, or if she suffers an immortality of pain when the scientists inject her repeatedly with viruses and drugs. When doctors asked Deborah for a blood sample, she readily gave it in fear she would die of the same cancer her mother did. No one told her the disease wasn’t heritable, and she repeatedly called the hospital for her cancer test results to no avail. Henrietta’s cells launched a multimillion-dollar industry of selling human biological materials, including HeLa, but her family never gave consent and never benefited. Sure, getting consent and keeping patients informed wasn’t standard practice at the time of Henrietta’s death, but it is now, and Henrietta’s story highlights why we need it more than ever.
This book brings a very human side to the field of medical research. We all benefit from Henrietta’s cells, and from the countless others who have suffered or died at the hands of doctors who didn’t need consent. The field of bioethics is still evolving, and even today, if you have something removed from your body at the doctor’s office, it’s no longer your property. You have no say over the type of research conducted no right to a share to any of the profits it generates. It’s an interesting law that deserves more attention, debate, and nuance.
Highly recommended for anyone who works in the field of science, but everyone should read this book!