Read The Immortal Life of Henrietta Lacks Online

Authors: Rebecca Skloot

Tags: #General, #Biography & Autobiography, #Internal Medicine, #Medical, #Science

The Immortal Life of Henrietta Lacks

E
ARLY
P
RAISE FOR
The IMMORTAL LIFE of
HE
NRIETTA
LA
CKS


Skloot makes a remarkable debut with this multilayered story about ‘faith, science, journalism, and grace
.’”


PUBLISHERS WEEKLY
(starred review)

“Heartbreaking and powerful, Rebecca Skloot’s sensitive account tells of the enduring, deeply personal sacrifice of this African American woman and her family and, at long last, restores a human face to the cell line that propelled 20th-century biomedicine.
A stunning illustration of how race, gender, and disease intersect to produce a unique form of social vulnerability, this is a poignant, necessary, and brilliant book
.”


ALONDRA NELSON
, Columbia University; editor of
Technicolor: Race, Technology and Everyday Life


The Immortal Life of Henrietta Lacks
takes the reader on a remarkable journey—compassionate, troubling, funny, smart, and irresistible
. Along the way, Rebecca Skloot will change the way you see medical science and lead you to wonder who we should value more—the researcher or the research subject? Ethically fascinating and completely engaging—I couldn’t recommend it more.”


DEBORAH BLUM
, author of
The Poisoner’s Handbook


This is a science biography like the world has never seen
… Ladies and gentlemen, meet Henrietta Lacks. Chances are, at the level of your DNA, your inoculations, your physical health and microscopic well-being, you’ve already been introduced.”


MELISSA FAY GREENE
, author
of Praying for Sheetrock
and
There Is No Me Without You

“Remarkable … The portrayal of Lacks’s full life
makes the story come alive with her humanity and the palpable relationship between race, science, and exploitation
.”


PAULA J. GIDDINGS
, author of
Ida, a Sword Among Lions;
Elizabeth A. Woodson 1922 Professor, Afro-American Studies, Smith College


This book is extraordinary
. As a writer and a human being, Skloot stands way, way out there ahead of the pack.”


MARY ROACH
, author of
Stiff and Bonk

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

A Few Words About This Book

Prologue: The Woman in the Photograph

Deborah’s Voice

Part One
LIFE

  1.
The Exam …
1951

  2.
Clover …
1920–1942

  3.
Diagnosis and Treatment …
1951

  4.
The Birth of HeLa …
1951

  5.
“Blackness Be Spreadin All Inside” …
1951

  6.
“Lady’s on the Phone” …
1999

  7.
The Death and Life of Cell Culture …
1951

  8.
“A Miserable Specimen” …
1951

  9.
Turner Station …
1999

10.
The Other Side of the Tracks …
1999

11.
“The Devil of Pain Itself” …
1951

Part Two
DEATH

12.
The Storm …
1951

13.
The HeLa Factory …
1951–1953

14.
Helen Lane …
1953–1954

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

20.
The HeLa Bomb …
1966

21.
Night Doctors …
2000

22.
“The Fame She So Richly Deserves” …
1970–1973

Part Three
IMMORTALITY

23.
“It’s Alive” …
1973–1974

24.
“Least They Can Do” …
1975

25.
“Who Told You You Could Sell My Spleen?” …
1976–1988

26.
Breach of Privacy …
1980–1985

      Photo Insert

27.
The Secret of Immortality …
1984–1995

28.
After London …
1996–1999

29.
A Village of Henriettas …
2000

30.
Zakariyya …
2000

31.
Hela, Goddess of Death …
2000–2001

32.
“All That’s My Mother” …
2001

33.
The Hospital for the Negro Insane …
2001

34.
The Medical Records …
2001

35.
Soul Cleansing …
2001

36.
Heavenly Bodies …
2001

37.
“Nothing to Be Scared About” …
2001

38.
The Long Road to Clover …
2009

Where They Are Now

Afterword

Acknowledgments

Notes

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.

I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen and sitting in a community college biology class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector. He pointed to two diagrams that appeared on the wall behind him. They were schematics of the cell reproduction cycle, but to me they just looked like a neon-colored mess of arrows, squares, and circles with words I didn’t understand, like “MPF Triggering a Chain Reaction of Protein Activations.”

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