She fought disease after her death

January 07, 2013 09:20 pm | Updated 09:20 pm IST

What is it to be the daughter of a mother you don’t remember seeing but whose cells help treat nearly every next person you see in your lifetime? What is it to be part of a family that cannot afford a doctor but gave birth to a woman who helped spin countless millions for medical industry?

The Immortal Life of Henrietta Lacks tells you irony is the rule of life. A life, though shortened by cervical cancer, proliferates in thousands every day at laboratories across the globe.

When a woman called Henrietta Lacks was admitted at Johns Hopkins Hospital, Baltimore, complaining of “a knot on my womb,” the diagnosis of cervical cancer didn’t make headlines. Two unassuming lab assistants scooped a swab of cells from her, without her permission or knowledge, to culture it as they did loads of other samples. But the loads of other samples faced quick deaths.

As the cancer research was at its embryonic stage, Henrietta did not quite get the treatment she needed. When she died at 31 years, she was survived by a husband and five children and a swab of tumour cells. But survive isn’t just what the cells did. They thrived in the medium, outgrew the small space and necessitated several more petridishes to grow on.

George Gey, who cultured the sample of first HeLa at Johns Hopkins, distributed the massively growing cells to researchers in India, Amsterdam, New York and across the world. But unfortunately for Gey, cell culture was already a passé. Researchers like Alexis Carrel attempted at growing “immortal chicken heart” and failed. (“…the public image of immortal cells was already tarnished. Tissue culture was the stuff of racism, creepy science fiction, Nazis and snake oil. It wasn’t something to be celebrated.”)

But very soon, the invulnerability of HeLa cells became world known, and by 1960s, scientists joked that “HeLa cells were so robust that they could probably survive in sink drains and doorknobs.”

For a very long time, the family of Henrietta was oblivious to the kind of phenomenon Henrietta was turning into, but very soon they would be barraged with questions from researchers and reporters alike.

While the sons of Henrietta held a notion that somewhere millions of money is being made using a part of their mother and they deserve a legitimate share, her daughter Deborah wanted just one thing: to understand what they mean by immortal cells of her mother.

Tucked in between Ms. Rebecca Skloot’s observation about medical ethics and the science behind HeLa’s crabgrass growth are a few pensive notes on Skloot’s friendship with Deborah. (“I was a science journalist who referred to all things supernatural as “woo-woo stuff”; Deborah believed Henrietta’s spirit lived on in her cells, controlling the life of anyone who crossed its path. Including me.”)

Emotional angle

Skloot’s prose is the strongest when recording the emotional catch of the Lacks family, whether her first phone conversation with Henrietta’s husband, Day, or the family’s unshakable belief that Johns Hopkins and other big hospitals abduct black people for experiments.

Bobbette, Henrietta’s daughter-in-law, puts it like this: “You’d be surprised how many people disappeared in East Baltimore… I’m telling you, I lived here in fifties when they got Henrietta, and we weren’t allowed to go anywhere near Hopkins… when we were young, we had to be on the steps or Hopkins might get us.”

Skloot heard about Henrietta in her high school when learning about how one enzyme misfiring can cause cancer. (Mitosis goes haywire, which is how it spreads. “We learned that by studying cancer cells in culture,” Defler said. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS.)

The Immortal Life of Henrietta Lacks , unarguably one of the best books ever written about medical ethics, reads like a whodunit, all the while quoting straight facts. With a timeline (1920s to 2000s) as a guide to readers, the chapters make a back and forth transition to report the researches on HeLa and the author’s attempt to touch base with the family.

But what makes it click is Skloot’s clever finesse in creating a pliable pace — just when the reader could take no more of cell contamination, vaccine and lawsuits, the story gathers a poignant momentum with the re-entry of the Lackses.

The decade-long work of Skloot gave the Lacks family a publicity they never imagined. There had been bits of information about Henrietta Lacks and loads of discreet researches on Lackses to unlock the secret of cell immortality before Ms. Skloot’s attempted to work on this book.

Skloot peels away the incomprehensible words wedged to bio-ethics and exposes the ABCs. Like when she talks about the days when patient confidentiality was unheard of and when a book about cell contamination, with pages of first-hand information drawn from Henrietta’s medical records, was published. For years, several patients, Skloot says, have sued their doctors for privacy violations. “But those patients had one thing going for them that Henrietta didn’t: They were alive. And the dead have no right to privacy — even if part of them is still alive.”

As she ploughs through the pages with dense facts and science names, the first-time author never misses a poignant quote or happy reminiscence.

Though HeLa is an archetypal example of moral chaos, tangled medical ethics and unfeeling researches, Ms. Skloot has a way of making Henrietta seem supernal.

THE IMMORTAL LIFE OF HENRIETTA LACKS: Rebecca Skloot; Pan Macmillan, 2/10, Ansari Road, Daryaganj, New Delhi-110002. Rs. 350.

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