Henrietta Lacks: A medical heroine, unsung no more

When I was a kid, my parents gave me an Isaac Asimov book. I don't remember which one, but it was non-fiction, and his way of engaging the reader directly immediately drew me in. Several years later I found the works of Stephen Jay Gould. I dug up every book of his I could find and ended up getting the hardcover of each new collection as it was published. Gould had a way of taking very complex topics and explaining them without dumbing them down. Although his personality came through clearly in his writing, he was rarely the subject of his own work, the notable exception being The Median is not the Message, a moving article on the statistics of his own cancer.

In The Immortal Life of Henrietta Lacks, author Rebecca Skloot is very much a part of the story. She shares the role of protagonist with a long-dead African American woman, a troubled but endearing Baltimore grandmother, and a cell culture. If this seems like an unlikely cast of characters, it is---and it is perhaps the reason this story is so engrossing.

Skloot first heard about Henrietta Lacks in a high school biology class. Lacks died young of cervical cancer. Before she died, her cancer cells were harvested by doctors researching cell culture techniques. This was done at a segregated hospital, in a segregated city, without her consent. This story stuck with Skoot, and accomplished science writer, and about ten years ago she began the obsessive journey that became the book.

The book begins in the tobacco fields of Virginia, where Henrietta Lacks was born and raised. The steel factories feeding the World War II industrial boom brought her to Baltimore, where she was living when she found a lump inside her vagina. She made the journey to the segregated wards of Johns Hopkins where she was diagnosed with cervical cancer.

The treatments available at the time were brutal and involved radiation delivered both internally and externally. For Henrietta, the treatments were not only ineffective but disabling, and she died a painful death.

The Lacks's didn't disappear with the death of Henrietta. The former share-croppers family that settled in Baltimore had their own families, families whose histories parallel those of many black migrants to large industrial centers. The Lacks family experienced on a very personal level the evolution of medical ethics. Henrietta was treated with only the most superficial form of consent and her family has struggled with this legacy.

Skloot, an educated, white writer, reached out to the Lacks's to find out more about Henrietta. What she found was a hurt and deeply suspicious family, one which would rarely answer her calls. But Skloot persisted, and the book artfully documents her experiences as her life becomes interwoven with theirs.

The book's deft narrative pulls the reader along as Skloot finally gets the Lacks's to answer her calls, and eventually finds her on an unlikely road trip with Deborah Lacks, Henrietta's daughter. The road trip takes them from the research labs of Johns Hopkins, to a former asylum (a prison, really) for "the Negro insane", to the tobacco fields where Henrietta was born. Along the way, Rebecca and Deborah learn things so terrible it nearly destroys them both. Their encounters with nightmarish photographs, family bibles, shotgun shacks, faith healers, and legions of deaf cousins keep you on the road with them. The Lacks family brilliantly described by Skloot is a family of subtle heroes, heroes with many, many flaws.

Superficially, this book is the story of the discovery of the first immortal cell culture, called "HeLa" after Henrietta Lacks. More profoundly, it's about the evolution of medical ethics, racism (on both an institutional and a very, very personal level), the fragility and strength of our humanity, and an American family who may seem alien to some readers, but only because it's not the family most often portrayed in writing. This book will appeal to anyone who enjoys good writing, and gives an intimate look at the evolution of medicine, American history (especially African American history), and how decisions made decades ago can influence the present and the future. In Lacks I've found a book that combines some of my favorite topics. In Skloot, I've found a new science writer in my pantheon, one that adds a human element in a way that is unique.

(I received an unsolicited free copy of The Immortal Life of Henrietta Lacks from the author after already having bought it myself.)

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