In all the hullabaloo over healthcare reform, one issue I never heard addressed by either the talking heads or the screaming ninnies on the Mall is the unfathomable gulf of education that separates the medical establishment from their most desperate clients. (A gulf underlined by the spelling on the ninnies’ signs.) Doctors don’t just talk over the heads of their patients; they often don’t even speak the same language.
In 1999, science journalist (and Portland native) Rebecca Skloot set out to tell the story of a patient who fell into gulf: Henrietta Lacks, a 30-year-old black woman who checked into Johns Hopkins 60 years ago with an abdominal lump that turned out to be cervical cancer. A sample of cells from that cancer, taken without the consent of Lacks or her family, turned out to be immortal; the cells, dubbed HeLa, bred in enormous quantity and shipped to researchers all over the world, essentially made possible the medical revolutions of the past half-century. But no one told Lacks, who died in 1951, her body riddled with horrific tumors, or her family, who lived in poverty in Baltimore, about the cells until 1973.
The story Skloot unearthed defies easy categorization. The history of Lacks and HeLa is as unpredictable as any pulp mystery and as strange as any science fiction. The Lacks family’s litany of misfortunes is darker than any in Faulkner or Shepard, and includes multiple instances of rape, incest and murder. There are even a few instances of the supernatural. On more than one occasion the author, who quickly becomes too involved with her subjects to write in the third person, appears to be in physical danger. It is a thrilling, entertaining and deeply unsettling book. It is also a timely one—while reading, I was frequently distracted by the ugly questions Lacks’ story poses. Do bits of me still belong to me when they’re removed from me? Should I patent my own genome? Should cell donors be paid? These may prove to be the questions of our age, and Skloot’s book the essential primer.
SEE IT: Rebecca Skloot reads from The Immortal Life of Henrietta Lacks at Powell’s City of Books, 1005 W Burnside St., 228-4651, powells.com. 7:30 pm Monday, April 12. Read an interview with Skloot on WWire.