Thursday, September 15, 2016

The Immortal Life of Henrietta Lacks

Rebecca Skloot's book should shock you. As the great wheel of America’s attention moves race to the top again, the story of Henrietta Lacks, a poor black woman dying of cancer in 1951, whose tumor cells were harvested by the hospital where she suffered and finally died, stands as an explosive example of the power structure’s indifference to Americans whose ancestry is African. Not only was she never asked for consent for the use of her tissues, her family found out inadvertently many years after her death, when portions of her medical records were quoted in news stories. Meanwhile, her cancer cells, of a surreal potency, spawned a multi-million dollar industry as HeLa in medical research.

Her family did not benefit. Indeed, when researchers tracked them down more than twenty years after Henrietta’s death to collect blood samples - curious to see whether any of her progeny carried those unique cells - they never explained their purpose nor followed up.

The enormity of this disrespect permeates the book. To read in magazine articles about the autopsy of your mother, whom you barely remember, is as profound an invasion as one can imagine. And when her children battled to set the record straight - even her name was bowdlerized - they were treated as an obstacle, a nuisance, people incapable of understanding and therefore undeserving of explanations.

Skloot is not just a brave and tireless researcher, she is a storyteller, building a narrative about a strong joyous woman, mother of five, whose untimely death tore the stable center from their lives. Through persistence and dedication, Skloot was able to earn the trust of a family who had no reason to trust anyone, especially a white person interested in the medical anomaly that their mother became to the world. She takes us into the volatile heart of a shattered group of people, making us feel the pain they endured, the bitter irony of Henrietta’s cell empire juxtaposed against their poverty and ill health.

What made her different from the other journalists and researchers who interviewed the Lacks family? She was not only bent on telling Henrietta’s full story, she was also determined to be fair to them. She cared. She was swept into their struggles, learning from them as they learned from her. And finally, the truth made healing possible. This should be required reading in high school science classes.