Race, Ethics and Medicine
by Lauren Williams, Public Services Librarian
Originally published by Columbia Daily Tribune.
“There’s a photo on my wall of a woman I’ve never met.” So begins the 2011 One Read selection, “The Immortal Life of Henrietta Lacks,” (Crown Publishers, 2009) by Rebecca Skloot. This line also inspired this year’s One Read flash fiction contest, inviting writers to tell a story in 250 words or less about a mystery woman of their own imagining, just one of many events scheduled as our community explores the wealth of themes addressed in this work of narrative nonfiction.
This diversity of events is one of my favorite things about the library’s community-wide reading program. Yes, we have engaging and varied book discussions, but we also invite participation through art, historical programs, lectures, films and writing. The library is fortunate to have a slew of creative and generous folks on the task force helping plan events to enrich and expand readers’ experiences of the One Read book.
This year, “The Immortal Life of Henrietta Lacks” provides ample subjects for consideration. Chief among them is medical ethics. Henrietta was a black woman whose cells — known to scientists as “HeLa” cells — were taken without her knowledge and became one of the most important tools in medicine, yet her surviving family cannot afford health insurance. Henrietta’s story is just one chapter in this country’s long, painful history of race, experimentation and inequality in health care. For an inclusive and highly readable study of black Americans being used as unwilling subjects of medical experimentation, see “Medical Apartheid” (Doubleday, 2006) by Harriet Washington. This work not only includes the notorious Tuskegee experiments of the 1930s in which hundreds were allowed to die from syphilis so researchers could study the disease but also traces lesser-known cases of unethical experimentation back to the Colonial period.
In contrast to Washington’s historical survey, Allen Hornblum’s “Sentenced to Science” (Pennsylvania State University Press, 2007) uses a single prisoner’s experience to illuminate the history of medical experimentation on black Americans. His reliance on Edward Anthony*rs s first-person account of suffering as a test subject while incarcerated in Philadelphia’s Holmesberg Prison makes for a compelling, dramatic narrative.
For a local look at the related topic of racial inequality in health care, check out one of this year’s One Read films “From Separate to Equal: The Creation of Truman Medical Centers”—showing Thursday, September 8 at William Woods University in Fulton and Wednesday, September 14 at the Columbia Public Library. The documentary chronicles the realities of health care in Kansas City at the turn of the 20th century, when black doctors, nurses and patients were excluded from most hospitals, and tells the story of the eventual integration of this health care system. Panel discussions will further investigate questions raised by Henrietta’s life and her immortal cells, as well as issues surrounding ownership of Henrietta’s story.
For readers wanting another perspective on medical ethics, particularly the effects of the increasingly profit-driven nature of medicine and drug companies’ influence on our medical care, Carl Elliott’s “White Coat, Black Hat” (Beacon Press, 2010) is an eye-opening romp of an exposé. For additional information related to cancer research, there is the comprehensive “Emperor of All Maladies” (Scribner, 2010) by Siddhartha Mukherjee. Framed as an epic struggle against a deadly enemy, Mukherjee’s biography of cancer outlines the history, science and cultural impact of our efforts to eradicate the disease that took Henrietta’s life.
In addition to the subjects addressed in this year’s One Read selection, programs also will consider the craft of its creation, the structure and style of narrative nonfiction. One of our September 21 book discussions, led by local author Susan Salzer (“Up From Thunder,” Cave Hollow Press, 2010) and hosted by Barnes and Noble, will focus on the novelist’s tools Skloot used to create her page turner. She re-creates scenes from Henrietta’s life in vivid detail and includes a vast amount of dialogue. Skloot masterfully alternates between her present-day detective work to uncover the Lacks family’s story and the history of the scientific breakthroughs made possible by Henrietta’s cells, similar to a novelist’s use of flashback in fiction. Readers craving more “nonfiction that reads like fiction” should start with a collection such as “In Fact: The Best of Creative Nonfiction” (WW Norton, 2005), edited by Lee Gutkind. While investigating a range of subjects, from the Jewish divorce ceremony to living with brain damage, these essays blur the lines between genres, providing sometimes surprising mash-ups of personal essays and investigative reports or memoirs and poetry.
Narrative nonfiction seems to include a little bit of everything, much like One Read itself. Whether you are a reader, a writer, an artist, a debater, a listener or some combination of these, we have a program sure to inspire a creative act, deepen your understanding of medical ethics, illuminate the intersection of race and science or simply provide an opportunity to celebrate Henrietta herself. For a complete list of this year’s One Read events, visit oneread.dbrl.org.