Racism and science collide in this devastating true story of Henrietta Lacks, the tissue sample from her body that spawned a million-dollar industry, and the impact on her family.
Length: 367 pages
Author: Rebecca Skloot
Publication Date: 2010-02
In 1951, an impoverished woman named Henrietta Lacks went to Johns Hopkins University Hospital to see a gynecologist. She was led into the Coloreds Only ward, where Dr. Howard Jones found a tumor on her cervix.
By today’s standards, the scientific practices of the '50s were primitive. Societal treatment of African-Americans was even worse. Segregation was the rule. The Lacks family, descended from slaves, are of mixed racial heritage. Nonetheless, the “one drop” rule was in full effect when Henrietta Lacks, aged 31, mother of five, received her cancer diagnosis. Little was known about cervical cancers at the time, and Jones thought Henrietta’s case treatable. He used the then-standard procedure of placing radium directly on the affected area, then subjecting the patient to strong courses of radiation.
Before he did these things, Jones shaved off a portion of Henrietta’s tumor and gave the sample to Dr. George Gey, who was trying to culture, or grow, human cells in laboratory medium. Nobody had successfully cultured cells before.
Henrietta was neither informed nor asked for her consent. Two momentous things happened: Henrietta’s cells proved to be superhuman, flourishing in Gey’s culture mediums. Lacks' cells divided and divided again, cellular kudzu, creating the now multibillion dollar human biologicals industry.
Henrietta was not as strong as her cells, and died a horrible death as her cancer rapidly metastisized. Her beloved children would grow up impoverished, physically abused, undereducated. Because the family was inbred (Henrietta and husband David were first cousins), the children, now aging adults, suffer varying degrees of nerve deafness. David was unfaithful, contracting syphilis, which he gave to Henrietta. In turn, their eldest daughter, Elsie, was born neurosyphilic: deaf, epileptic, and developmentally delayed. She was not toilet trained and did not speak. Precisely how seriously delayed she was is forever unknown, as doctors recommended the child be sent to Crownsville State Hospital, once called the Hospital for the Negro Insane. She died there at age 15.
For years nothing was known about her, or, for that matter, Henrietta Lacks, whose cells were not only traveling around the world, but to the moon. Dubbed HeLa cells, the cell line is alive and well, responsible for helping scientists cure polio, learn more about cancer, map genes, treat AIDS, and generally serve as a cellular research’s backbone.
Except -- this is the second momentous thing -- nobody bothered to tell the Lacks family. Or offer them compensation. They found out about HeLa cells gradually, with varying degrees of comprehension, when reporters came knocking. They understandably came to hate both the reporters and the medical personnel at Hopkins. Some felt they were owed money; others simply wanted an explanation. Some wanted nothing at all to do with any of it. Henrietta, adored mother, wife, and cousin, talented cook and caring mother, had died young and white people were doing something incomprehensible with some of the remains of her body.
In 1988, a white teenager named Rebecca Skloot attended an introductory biology class where teacher Donald Defler was teaching cell structure. He explained how cells divided, how cancer happened, then wrote "HENRIETTA LACKS" on the blackboard.
Skloot wondered about the woman. Did she have children? Did she know about her cells? Did her family know? The idea grabbed hold, and with remarkable tenacity, the once truant teenager finished high school, earned an MFA in writing, and began trying to contact the Lacks family. Her initial attempts were rebuffed. Undeterred, Skloot began researching the Lacks family, Johns Hopkins, the state of science in the 1950s and '60s, and the growth of HeLa cells from a modest laboratory to a million dollar industry.
The resulting debut is a stunner, worthy of every award shortlist. Skloot is careful to remain neutral while telling the story of Henrietta and her family, though this had to be difficult. Skloot’s father, Floyd, is also a writer. Years ago he contracted a virus that attacked his brain, leaving huge gaps in his cognition. Incredibly, he remains able to write -- beautifully -- of what life is like in his neurologically addled mind. Then a teenager, Rebecca was present throughout his illness and recovery. Though the Lacks family endured harsher treatment thanks to pervasive racism, the experiences are analogous at points.
Skloot’s story loops between the Lacks family and the development of scientific inquiry. The scientific advances between 1951 and 2010 are dramatic: when Jones gave Gey a bit of Henrietta’s tumor, cell mediums -- what one feeds a cell to keep it alive -- weren’t standardized. In his endless efforts to grow the perfect cell medium, Gey frequented slaughterhouses for cow and chicken blood, personally slitting chicken throats himself, bring the birds home to wife Margaret, who prepared them for dinner. He rigged a bell between the Hopkins neonatal unit and his lab. At every birth, he sent lab workers to collect umbilical cord blood.
Gey built much of his lab himself, with salvaged materials. Margaret, trained as surgical nurse, was fanatic about sterility, saving his many experiments from failure. This didn’t stop lab personnel from eating where they worked, gazing at tumerous mice as they lunched, or working without lab hoods. Cells floated everywhere, their manipulators heedless.
Skloot, meanwhile, worked for years to gain the Lacks family’s trust, with varying degrees of success. Henrietta came from an extended family in Clover, Virginia, where they farmed tobacco. When Skloot drove there on her own dime, she got lost. The the townspeople were greatly amused, waving gaily each time the white woman circled through their tiny town. Skloot mustered her nerve and emerged from the car, only to learn that nearly all the inhabitants of Clover were Lacks kin.
She met people who recalled Henrietta, making HeLa a person. Henrietta Lacks was warm, had a way with children, and was known for her slow-cooked greens and the enormous pots of spaghetti and meatballs she kept on the stove to feed hungry cousins. She loved to dance and though her nails were kept short, she manicured them religiously, her finger and toenails always a perfect red. She was able to soothe the beautiful, near-feral Elsie, dressing her in handmade clothes and tying her curling hair in ribbons. Chillingly, one cousin remarked to Skloot that he knew she must be a northerner because she addressed him as an equal.
Skloot allows you to fall in love with Henrietta, making the circumstances of her death are all the more awful. On her deathbed, she begged her cousins to care for her children. When she died, Hopkins wanted to do an autopsy on this very valuable piece of human flesh. Husband David grudgingly agreed to a limited autopsy, which revealed a body eaten alive by cancer. Over 50 years later, George Gey’s assistant, Mary Kubicek, would recall that autopsy and the woman’s red toenails, which rendered a dead body, a thing, into an actual woman.
Gey sent HeLa cell lines around the country. He experimented with optimal mailing methods: packed in ice, packed with two days worth of medium, in a vial in a shirt pocket, by plane, train, automobile. He charged minimal fees for the cells, just shipping. He was never interested in the financial gains scientists would later seek in gene patents and drug company ventures.
The Lacks story brings up the increasingly fraught debate over tissue sampling. The National Institutes of Health has a tissue bank. You might have a sample there, some part of your body you gave up willingly, in the interests of your well-being. Were you informed about the destination of your biopsy, or like me, assumed it would be tossed into the biohazard bin? Were you asked for consent when they removed that dubious mole? What about the interests of others? What if your cells were somehow special?
At this writing, informed consent about tissue sampling, rights, and use are in their infancy. The fights are vicious, and each side has reasonable points. Some of the Lacks family feel financial compensation is due them; some scientists do, too, notably Christoph Lengauer, a scientist formerly at Hopkins. He presented the Lacks children with a print of Henrietta’s chromosomes, beautifully colored with fluorescent dyes. He invited them to his lab, where he placed HeLa under a microscope and explained what they saw.
Others feel contributing to humankind’s well being is a moral duty. After all, once the tissue is outside your body, or you are dead, what difference does it make to you? A very few patients have fought this notion and won some control over their tissue rights, but Skloot herself says the ethical argument, while inescapable and vividly illuminated here, is beyond the scope of Henrietta.
Against the backdrop of scientific discovery, the motherless Lacks children were sent to live with a cruel cousin, Ethel, and her husband, Galen. Ethel beat, starved, and overworked the children horribly, taking out particular wrath on Joe, the youngest boy. He grew up enraged, killed a man, spending much of his life in and out of jail. He converted to Islam, changing his name to Zakariyya. Only now, an older gentleman, deaf and nearly blind, is Zakariyya making peace with himself and the world.
Henrietta’s surviving daughter, Deborah, had to fend off Galen’s advances. She was 10-years-old, hard of hearing, and nobody would tell her what happened to her mother. The children were finally rescued when their eldest brother, Lawrence, married his longtime girlfriend Bobette. Bobette, only a young woman herself, realized the children were being abused and took them in. She taught Deborah to fend off Galen. She forced her to finish school. She explained what pregnancy meant, how it happened, and why sleeping with cousins was unhealthy. However, when Deborah asked about her mother, or what happened to Elsie, nobody, not even Bobette, would answer her.
Deborah Lacks is a tremendous presence in the book, an intelligent woman whose circumstances never allowed her to recognize her true potential. Her hearing loss meant her education was spotty; it wasn’t until adulthood that the Lacks children were finally fitted with the hearing aids they so desperately needed. Her first marriage ended after her husband beat her senseless one too many times. She fled with her two small children to an apartment and worked two jobs.
She suffered diabetes, high blood pressure, and crushing anxiety. She longed to know about her mother and sister. She vacillated between speaking with Skloot and shutting her out, finally accepting the young writer’s good intentions. Deborah allowed Skloot to reprint portions of her diary, a trenchant document of a woman wanting the truth about her mother and sister.
HeLa continued its course. In May 1956, scientist Chester Southam began worrying HeLa might infect healthy humans. To that end, he turned to the prison system, recruiting volunteers willing to be injected with HeLa cells. Southam then moved to injecting patients at Sloan-Kettering and James Ewing hospitals. He did not seek consent or tell patients what he was doing. It wasn’t until three Jewish doctors, citing the Nuremburg code, refused to comply with Southam’s protocols that the injections were halted. In the ensuing media mess and trial, Southam nearly lost his medical license, and the wars about patient consent began.
In 1966, scientist Stanley Gartler stood at a symposium podium and dropped what came to be known as the “HeLa bomb”. He discovered most of his cells -- lines he thought were clear of HeLa, contained a rare genetic marker known as G6PD-A, found exclusively in African Americans. As this discovery ultimately tanked millions of dollars of research, Hopkins was contacted: they were to get blood samples from the surviving members of the Lacks family.
Skloot located one of the people who visited the family home. Susan Hsu was a young postdoc when she visited the Lacks family for blood samples. She was told to tell them nothing; for years Deborah Lacks was certain those blood samples meant that she, too, had Henrietta’s cancer. As for Susan Hsu, she went on to become a director of Medical Genetics at Johns Hopkins. She willingly gave Skloot her time and memories, adding that if the Lacks family was amenable, she’d love to come out and take new samples.
The Immortal Life of Henrietta Lacks is far more than a scientific history of a prolific cell line. It’s a story about the countless ways humans treat one another abominably, in this case, with blatant, nauseating racism. Reading it felt like a slap in the face, like seeing the televised shots from the Ninth Ward post-Hurricane Katrina. It made me want to call the Lacks family and apologize.
By all means, read this book -- not only to educate yourself about the ways science is moving faster than ethics, but to give Henrietta Lacks and her family the recognition and thanks they so richly deserve. For those interested, there is a scholarship fund Skloot set up for Lacks’ descendants: HenriettaLacksFoundation.org.