Henrietta Lacks: How a Black Woman’s Cells Fueled Medical Progress
Posted By The Editors | April 16th, 2010 | Category: Hot Topics | 1 Comment » 
By Janet Singleton
“Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did it on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.”
—The Immortal Life of Henrietta Lacks by Rebecca Skloot
Throughout much of her childhood Deborah Lacks had no idea what became of her mother. Yet her mother even then, in the 50s and 60s, was famous. Random readers, undergrad science students, and ordinary lab technicians knew of HeLa: a still-growing cell line obtained from the cancerous cervical tumor of Henrietta Lacks, a black woman who died from the malignancy in 1951.
Frequently misnamed in research literature, Henrietta Lacks was a mystery. So was what she and her family went through, until now. In penning The Immortal Life of Henrietta Lacks, science writer Rebecca Skloot has written one of the early twenty-first century’s most important books about race. Her work intimately exposes the crucial connection between institutionalized racism and the everyday suffering of individuals. Rebecca Skloot has put together a work that reads like a combination of The Color Purple and a clever basic biology text.
Over the decades HeLa samples were passed around among the science community the way hearty chrysanthemum seeds might be shared by a garden club. Researchers have manufactured 50,000 million metric tons of them for the execution of thousands of studies and the development of generations of pharmaceuticals. They became, scientist Lisa Margonelli wrote in New York Times, “one of the most important medical discoveries in the last 100 years.”
The science community made golden hay in the sunshine of global competition and commerce. Even the polio vaccine received a boost from the HeLa cells, which were cheaper to run test trials on than were monkeys. Sixty thousand studies made use of the line, and it traveled everywhere on the planet, including a robust research laboratory at the Tuskegee Institute. They even went to the moon. Under the auspicious umbrella of HeLa, careers thrived, lucrative new drugs hit the market, and the fresh medical discoveries reigned in the brave new world launched by twentieth-century techno-science.
In the meantime, Lacks’ survivors lived in the primitive old world that Jim Crow built. Henrietta, herself, had grown up in a cabin in Clover, Virginia, where her grandfather had once lived as a slave. Her only surviving daughter, Deborah Lacks, experienced a Dickensian nightmare of a childhood. A Baby Boomer, born a couple of years before her mother’s death, she suffered brutal consequences for being a motherless child: semi-starvation, battering, and sexual assault. Her education was stunted because of late-diagnosed deafness in one ear. But one of the worst burdens was not knowing what had become of her mother and being too afraid to ask in a household where adults applied draconian punishments to children who asked too many questions (and one inquiry might constitute too many).
She grew up from that stress-and-horror chamber to be a one-woman microcosm of the black health crisis. She had high blood pressure, osteoporosis, diabetes, depression, and anxiety disorder. Despite it all, she became Skloot’s guide through the Lacks’s tattered universe. And Skloot became a science emissary to the family and explained the nature of cells and what happened to their mother’s. One of the book’s most touching moments is when Deborah and her understandably angry brother, Zakariyya, visit the basement of Johns Hopkins and for the first time see a tube of their mother’s cells. Deborah is in awe, and for a moment her sibling’s rage is hushed.
No one in the family had known that Henrietta’s cells were being used for experimentation until 25 years after her death. It shocked them when they found out by accident. And when researchers took blood samples from them to get yet more information, what the scientists said only further confused and scared the family. By then the Lacks’s privacy had been breached and their medical records had been made public. After coming upon an autopsy report, Deborah became preoccupied with her mother’s possible suffering; the orphaned daughter went through a period of emotional agony and relentless insomnia.
Yet Deborah eventually adopted a kindly perspective. She said: “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drug store! . . . But I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
Of course we are not given a list of medications Deborah has been prescribed. But considering recent revelations about side effects, fatalities, and just plain old ineffectiveness associated with some drugs, it may have been reasonable for her to have raged at science, not just because of HeLa, but because the “drug stores” she and so many others shoulder are not even reliable pharmacies. Likely the inevitably and poignantly depressed Deborah was prescribed antidepressants. Studies that indicate antidepressants do not work have recently set the medical science world aflame. A lot of evidence suggests that—pills that have been doled out for 60 years and can cost up to $5 a piece— are little more effective than are placebos.
From the moment of her birth, Deborah Lacks was a draftee into the medical industrial complex: a socioeconomic syndrome that encourages ill-health, especially among the vulnerable and/or traumatized, then profits from it through the sale of medical treatments that may or may not work. Yes, that might be a bold extrapolation. And even if it occurred to Skloot, perhaps she did not want to risk her judicious book losing its balance.
Skloot’s is a work compassionate to both the Lacks family and to the scientific community. After all, had it not been for Jonas Salk, we would have grown up in fear of polio. But then there is the other side of research that possibly does not deserve much respect. The lay sector imagines science as a field defined by altruism, genius, and nobility. Yet anyone who has ever worked in an academic laboratory may remember an atmosphere as likely stuffy with arrogance, economic opportunism, blind careerism—and even deceit. Inevitably, businesspeople and scientists climbed the crooked latter of HeLa’s DNA to status and wealth while Henrietta’ s family remained lowly and received no direct benefit from their progenitor’s stolen biological property. And of course the connection was as generally unbeknownst to researchers, well-intentioned and otherwise, as it was to the Lacks family.
Skloot’s book is the tale of tragedies and miracles. Henrietta Lacks’s journey is reminiscent of Maya Angelou’s faithful and defiant poetry. In her 31 years of life, the woman was misused, belittled, and dismissed, yet her cells continue to grow in lab cultures around the world, as if saying silently to the universe, “Still I rise.”
Janet Singleton is an award-winning journalist.
Rebecca Skloot created a scholarship fund for descendents of Henrietta Lacks. To donate contact HenriettaLacksFoundation.org
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