So, I had arrived at the beach with almost nothing besides a bunch of bathing suits, and for a couple days it was nice just meditating in a hammock by the ocean. I gazed into the expansive horizon while sipping my beer, watching surfers beat through the whitewash.
What would go great with a hammock, a beer, and an oceanside beer? The vacation gods were looking out for me, because The Surfing Turtle had a plethora of books that were left behind by other travelers. Some were missing covers or oily from being flipped through by sunscreen-lathered hands, and only a small amount were actually in English. Instead of going off the deep end and reading options like The Metamorphosis or Heart of Darkness, I picked up what I thought would be a lighter read: The Immortal Life of Henrietta Lacks. If there was a cover to read the synopsis, I probably would have passed. Cells? Cervical cancer? Medical ethics? Pass! What a drag! Boy would I have been wrong. I took its tattered appearance as evidence of a good story, and of course it was.
When I came back to D.C. and was watching TV (eating ice cream with abandon now that I’m not in a bikini) I saw a commercial for none other than The Immortal Life of Henrietta Lacks, an HBO movie starring Oprah Winfrey and Rose Byrne. I’m happy that the story is gaining the wider audience it deserves, because it exposes the man behind the curtain – not only how research is conducted on humans in the United States, but the history of racism in our medical system. Rebecca Skloot’s thoughtfully researched book attempts to not only tell Henrietta’s story, but to place her life on the timeline of scientific research in America. The book transcends scientific writing by providing the narratives of the lives affected by research. Far from providing concrete answers to the questions it examines, the book encourages readers to consider bioethics for themselves.
Henrietta’s story began long before the age of informed consent and in the era of the Tuskegee syphilis experiment. Doctors rarely bothered explaining diagnoses or treatments to black patients, and naturally there was distrust and tension toward medical professionals. Black communities told stories, often based in truth, of young men being abducted in the night for research. Community members even avoided walking around Johns Hopkins after dark to avoid being abducted by men in lab coats.
It was in this environment that Henrietta Lacks underwent treatment for cervical cancer in the “colored” ward of John’s Hopkins. Before her death in 1951, researchers biopsied her aggressive cervical carcinoma, and her cells became the first to successfully reproduce and survive outside the human body. HeLa, named after Henrietta, opened the door to study the effects of treatments on cells and watch them progress in real time, under a microscope. Beginning immediately, scientists excitedly reproduced, shared, reproduced, and shared the robust HeLa, using them to study radiation, vaccines, gene mapping, and countless other studies that benefited people the world over. They were even sent into space at one point! Meanwhile, Henrietta was dying in excruciating pain with tumors blossoming everywhere in her body. After her death, her children continued to live in poverty, unaware of their mother’s fame in the research community. It wasn’t until 1973 that they learned of their mothers’ cells being used for research, and even then no one even bothered to explain to them what cells actually were.
The story winds its way through the history of black Americans being systematically taken advantage of in the name of science. It challenges the intersection of ethics and law, and whether patients and their families have rights to their DNA or tissue. Even today, some of Henrietta’s relatives feel that the new HBO movie is just another example of other people profiting from Henrietta’s story whilst her descendants are refused compensation. Members of her family continue to dispute facts presented by Skloot, and I think readers should examine the arguments for themselves.
Even reading the book, I began to realize how many aspects of it are problematic. For one, it is yet another white savior narrative – a college-educated white reporter coming to the aid of a poor black family, telling their story and claiming to help them financially. Some family members are taking back control of her story and using it positively, but of course the question remains are they owed anything, and if so what?
The questionable juxtaposition of reading about their family’s fraught history while chilling on a beach was not lost on me, but no matter where you are this book is a lesson about the woman who, at some point in your life, probably made your health possible.