Lacks Henrietta - The Immortal Life of Henrietta Lacks

Part One

Part Two

Part Three

38.

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 whove written about the Lacks family. I also relied on extensive archival photos and documents, scientific and historical research, and the personal journals of Henriettas daughter, Deborah Lacks.

Ive 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 Henriettas relatives said to me, If you pretty up how people spoke and change the things they said, thats dishonest. Its taking away their lives, their experiences, and their selves. In many places Ive adopted the words interviewees used to describe their worlds and experiences. In doing so, Ive 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 Ive kept their usage when theyre speaking. Anything written in the first person in Deborah Lackss 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 Henriettas medical record in is a summary of many disparate notations.

The word HeLa, used to refer to the cells grown from Henrietta Lackss 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; Ive done my best to present them clearly within the narrative of the Lacks story, and Ive 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.

We must not see any person as an abstraction.
Instead, we must see in every person a universe with its own secrets,
with its own treasures, with its own sources of anguish,
and with some measure of triumph.

E LIE W IESEL
from The Nazi Doctors and the Nuremberg Code

T heres a photo on my wall of a woman Ive never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. Its the late 1940s and she hasnt yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside hera tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is Henrietta Lacks, Helen Lane or Helen Larson.

No one knows who took that picture, but its appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. Shes usually identified as Helen Lane, but often she has no name at all. Shes simply called HeLa, the code name given to the worlds first immortal human cellsher cells, cut from her cervix just months before she died.

Her real name is Henrietta Lacks.