Suggesting a “good biography of Deborah Lacks” that combines details from Rebecca Skloot’s nonfiction book on Deborah’s mother, Henrietta, her family, and the medical and ethical issues at the center of the story, and from “real life” is a bit perplexing. The Immortal Life of Henrietta Lacks, as noted, is nonfiction, and provides copious details on Deborah, who plays a major role in Skloot’s investigation. In addition, Deborah’s death in 2009 lent itself to a number of obituaries and remembrances that reiterate her role in Skloot’s study of the unauthorized harvesting of Henrietta’s cells and their continued application in medical research – an entirely meritorious enterprise tainted by the questionable ethics involved in their extraction and exploitation. Henrietta Lacks suffered from an extraordinarily aggressive form of cervical cancer that made her tissue – her cells – of particular interest to medical researchers. Deborah knew she carried her mother’s genes and, with them, a potentially elevated risk for the same cancer that took her mother when Deborah was only two years of age. As the Lacks family focused on the issue of financial compensation for the unauthorized use of Henrietta’s cells, Deborah eventually grew more interested in her late-mother’s case from a more academic perspective, and devoted much of her remaining years to studying Henrietta’s case – an important pivot from which to understand her own possible destiny. Deborah’s death in 2009 at the age of 60 ended an important chapter in the case of the so-called HeLa (for Henrietta Lacks) cell line. Any biography of Deborah would include her family’s humble origins and the unique circumstances that catapulted that family, and Deborah in particular, into the public eye. Skloot’s book is rich in detail, and acknowledges use of Deborah’s private journals. Early in the prologue to The Immortal Life of Henrietta Lacks, Skloot includes the following observation regarding a Lacks family photograph taken soon after they learned of the continued existence of Henrietta’s cells:
“. . . one picture stood out more than any other: in it, Henrietta’s daughter, Deborah Lacks, is surrounded by family, everyone smiling, arms around each other, eyes bright and excited. Except Deborah. She stands in the foreground looking alone, almost as if someone pasted her into the photo after the fact. She’s twenty-six years old and beautiful, with short brown hair and catlike eyes. But those eyes glare at the camera, hard and serious. The caption said the family had found out just a few months earlier that Henrietta’s cells were still alive, yet at that point she’d been dead for twenty-five years.”
That Deborah would eventually make a sort of peace with her and her mother’s histories does not detract from the fears, uncertainties and anger that dominated much of her life. Skloot’s book, like most, includes a section dedicated to thanking those who inspired her and who aided her in her research. When she gets to Deborah Lacks, she writes the following:
“Deborah was the soul of this book—her spirit, her laughter, her pain, her determination, and her unbelievable strength were an inspiration that helped keep me working all these years. I feel deeply honored to have been part of her life.”
Any biography of Deborah may not begin there, but it should certainly end there.