The Immortal Life of Henrietta Lacks
Read The Immortal Life of Henrietta Lacks Online
Authors: Rebecca Skloot
M
ORE
P
RAISE FOR
The IMMORTAL LIFE of
HE
NRIETTA
LA
CKS
“No one can say exactly where Henrietta Lacks is buried: during the many years Rebecca Skloot spent working on this book, even Lacks’s hometown of Clover, Virginia, disappeared. But that did not stop Skloot in her quest to exhume, and resurrect, the story of her heroine and her family. What this important, invigorating book lays bare is how easily science can do wrong, especially to the poor. The issues evoked here are giant: who owns our bodies, the use and misuse of medical authority, the unhealed wounds of slavery … and Skloot, with clarity and compassion, helps us take the long view.
This is exactly the sort of story that books were made to tell—thorough, detailed, quietly passionate, and full of revelation.”
—
TED CONOVER
,
author of
Newjack and The Routes of Man
“It’s extremely rare when a reporter’s passion finds its match in a story. Rarer still when the people in that story courageously join that reporter in the search for what we most need to know about ourselves. When this occurs with a moral journalist who is also a true writer—a human being with a heart capable of holding all of life’s damage and joy—the stars have aligned.
This is an extraordinary gift of a book, beautiful and devastating—a work of outstanding literary reportage. Read it! It’s the best you will find in many, many years.”
—
ADRIAN NICOLE LEBLANC
,
author of
Random Family
“
The Immortal Life of Henrietta Lacks
brings to mind the work of Philip K. Dick and Edgar Allan Poe. But this tale is true. Rebecca Skloot explores the racism and greed, the idealism and faith in science that helped to save thousands of lives but nearly destroyed a family.
This is an extraordinary book, haunting and beautifully told.”
—
ERIC SCHLOSSER
,
author of
Fast Food Nation
“Rebecca Skloot has written a marvelous book so original that it defies easy description. She traces the surreal journey that a tiny patch of cells belonging to Henrietta Lacks’s body took to the forefront of science. At the same time, she tells the story of Lacks and her family—wrestling the storms of the late twentieth century in America—with rich detail, wit, and humanity. The more we read, the more we realize that these are not two separate stories, but one tapestry.
It’s part
The Wire
, part
The Lives of the Cell
, and all fascinating.”
—
CARL ZIMMER
,
author of
Microcosm
For my family:
My parents, Betsy and Floyd; their spouses, Terry and Beverly;
my brother and sister-in-law, Matt and Renee;
and my wonderful nephews, Nick and Justin.
They all did without me for far too long because of this book,
but never stopped believing in it, or me.
And in loving memory of my grandfather,
James Robert Lee (1912–2003),
who treasured books more than anyone I’ve known.
Contents
Prologue: The Woman in the Photograph
Part One
LIFE
3.
Diagnosis and Treatment …
1951
5.
“Blackness Be Spreadin All Inside” …
1951
7.
The Death and Life of Cell Culture …
1951
8.
“A Miserable Specimen” …
1951
10.
The Other Side of the Tracks …
1999
11.
“The Devil of Pain Itself” …
1951
Part Two
DEATH
13.
The HeLa Factory …
1951–1953
15.
“Too Young to Remember” …
1951–1965
16.
“Spending Eternity in the Same Place” …
1999
17.
Illegal, Immoral, and Deplorable …
1954–1966
18.
“Strangest Hybrid” …
1960–1966
19.
“The Most Critical Time on This Earth Is Now” …
1966–1973
22.
“The Fame She So Richly Deserves” …
1970–1973
Part Three
IMMORTALITY
25.
“Who Told You You Could Sell My Spleen?” …
1976–1988
26.
Breach of Privacy …
1980–1985
27.
The Secret of Immortality …
1984–1995
29.
A Village of Henriettas …
2000
31.
Hela, Goddess of Death …
2000–2001
32.
“All That’s My Mother” …
2001
33.
The Hospital for the Negro Insane …
2001
37.
“Nothing to Be Scared About” …
2001
38.
The Long Road to Clover …
2009
A Few Words About This Book
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.
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
PROLOGUE
The Woman in the Photograph
T
here’s a photo on my wall of a woman I’ve 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. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her—a 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 it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human
cells—her
cells, cut from her cervix just months before she died.
Her real name is Henrietta Lacks.
I’ve spent years staring at that photo, wondering what kind of life she led, what happened to her children, and what she’d think about cells from her cervix living on forever—bought, sold, packaged, and shipped by the trillions to laboratories around the world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.
There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.