Henrietta Lacks was a black woman from Baltimore who died of cervical cancer in 1951. At the time, treatment for cervical cancer was highly ineffective, and scientists still had not figured out a way to keep cell cultures in a lab. Howard Jones (Henrietta’s doctor) and his boss, Richard Wesley TeLinde, were scientists working to find ways to prevent cervical cancer from spreading. They spoke to George Gey, the head of tissue culture research at Johns Hopkins, and worked out a mutually beneficial agreement: TeLinde would supply Gey with cancerous tissue if Gey would agree to try to grow the cells in his lab.
During an operation at Johns Hopkins, a tissue sample without Henrietta’s knowledge or consent. Cells taken from this tissue sample were discovered to grow at an alarming rate. Though Henrietta eventually died from her aggressive form of cancer, her multiplying cells–eventually known to the world as HeLa cells–served as a scientific breakthrough and continue to be used by scientists to this day. In fact, it is estimated that if you were to pile up all of the HeLa cells ever grown, they would weigh more than 100 Empire State Buildings.
Naturally, scientists and science-related companies have profited greatly off of Henrietta’s unwitting contribution to scientific research. Her family, however, did not: Henrietta was buried in an unmarked grave, and her family lives in poverty to this day. Even though HeLa cells led to medical breakthroughs, her children can’t even afford health insurance.
Though The Immortal Life of Henrietta Lacks dissects various issues relating to patient consent, confidentiality and scientific ethics, it is also about the impact that HeLa breakthroughs had on Henrietta’s family, who didn’t even know that her cells had been taken until twenty years after her death. Since no one ever explained to them why or how Henrietta’s cells were being used, there was a lot of anxiety–especially in Henrietta’s daughter, Deborah–when the experiments came to light:
The more Deborah struggled to understand her mother’s cells, the more HeLa research terrified her. When she saw a Newsweek article called PEOPLE-PLANTS that said scientists had crossed Henrietta Lacks’s cells with tobacco cells, Deborah thought they’d created a human-plant monster that was half her mother, half tobacco. When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation.
Rebecca Skloot spent ten years researching and writing the book; during that time, she became close to the family; Deborah even went along on some of the research trips. As she works to uncover the story of Henrietta’s life, Skloot also uncovers the troubling impact that her death had on her children (the story of one of her children is particularly horrifying). Though Skloot eventually earned the family’s consent to write this book, I couldn’t help but what the impact of such a detailed account of their history would have on their lives, especially considering the popularity of the book.
Embracing a trend that seems to be gaining popularity among nonfiction books these days, Skloot wrote the book in a way that makes it read like a novel. Depending on the reader, this could either help or hinder one’s reading. Personally, I found the style slightly jarring at first, like, “Hey! How do you know that’s what she thought?” That said, I have to praise the overall effect of Skloot’s writing. Even though I’m embarrassingly bad at science, I found Skloot’s scientific explanations very clear and easy to comprehend (I really wish she’d been my Bio I & II prof in undergrad).
The Immortal Life of Henrietta Lacks is both fascinating and devastating, and it definitely lives up to all the hype it garnered last year. Because of all the ethical questions it raises, I wish it were required reading for everyone working in a medical or scientific field.
The Immortal Life of Henrietta Lacks was released on February 2, 2010 by Crown Publishing, an imprint of Random House.