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T his is a work of nonfiction. No names have been changed, no characters invented, no events fabricated. While writing this book, I conducted more than a thousand hours of interviews with family and friends of Henrietta Lacks, as well as with lawyers, ethicists, scientists, and journalists who’ve written about the Lacks family. I also relied on extensive archival photos and documents, scientific and historical research, and the personal journals of Henrietta’s daughter, Deborah Lacks.
I’ve done my best to capture the language with which each person spoke and wrote: dialogue appears in native dialects; passages from diaries and other personal writings are quoted exactly as written. As one of Henrietta’s relatives said to me, “If you pretty up how people spoke and change the things they said, that’s dishonest. It’s taking away their lives, their experiences, and their selves.” In many places I’ve adopted the words interviewees used to describe their worlds and experiences. In doing so, I’ve used the language of their times and backgrounds, including words such as colored . Members of the Lacks family often referred to Johns Hopkins as “John Hopkin,” and I’ve kept their usage when they’re speaking. Anything written in the first person in Deborah Lacks’s voice is a quote of her speaking, edited for length and occasionally clarity.
Since Henrietta Lacks died decades before I began writing this book, I relied on interviews, legal documents, and her medical records to re-create scenes from her life. In those scenes, dialogue is either deduced from the written record or quoted verbatim as it was recounted to me in an interview. Whenever possible I conducted multiple interviews with multiple sources to ensure accuracy. The extract from Henrietta’s medical record in chapter 1 is a summary of many disparate notations.
The word HeLa , used to refer to the cells grown from Henrietta Lacks’s cervix, occurs throughout the book. It is pronounced hee-lah .
About chronology: Dates for scientific research refer to when the research was conducted, not when it was published. In some cases those dates are approximate because there is no record of exact start dates. Also, because I move back and forth between multiple stories, and scientific discoveries occur over many years, there are places in the book where, for the sake of clarity, I describe scientific discoveries sequentially, even though they took place during the same general period of time.
The history of Henrietta Lacks and the HeLa cells raises important issues regarding science, ethics, race, and class; I’ve done my best to present them clearly within the narrative of the Lacks story, and I’ve included an afterword addressing the current legal and ethical debate surrounding tissue ownership and research. There is much more to say on all the issues, but that is beyond the scope of this book, so I will leave it for scholars and experts in the field to address. I hope readers will forgive any omissions.