Friday, May 3, 2013

REVIEW: The Immortal Life of Henrietta Lacks by Rebecca Skloot


Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia—a land of wooden slave quarters, faith healings, and voodoo—to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

Hardcover, 370 pages
Published February 2nd 2010 by Crown Publishing Group
ISBN 1400052173 (ISBN13: 9781400052172)

About the Author

Rebecca Skloot is an award winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many other publications. She specializes in narrative science writing and has explored a wide range of topics, including goldfish surgery, tissue ownership rights, race and medicine, food politics, and packs of wild dogs in Manhattan. She has worked as a correspondent for WNYC’s Radiolab and PBS’s Nova ScienceNOW. She and her father, Floyd Skloot, are co-editors of The Best American Science Writing 2011 . You can read a selection of Rebecca Skloot's magazine writing on the Articles page of this site.

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My Thoughts
There'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 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."
Back in the '50s, a poor young black mother and wife by the name of Henrietta Lacks found herself in John Hopkins hospital dying from cervical cancer. While treating her and in the course of taking samples and running tests,the doctors took a little extra tissue to do some private testing, without her knowledge, only to discover that her cancerous cells were unique and would go on to help countless scientific studies and lead to breakthroughs in research and medicine. And all of this happened without her knowledge, and with no benefit to her surviving family.

Author Rebecca Skloot spent years researching this story, patiently gaining the trust of surviving family members, becoming friends with many of them and even becoming like family to at least one. She grew to care about the characters involved in her story, and wanted to bring some humanity to Henrietta and her descendants.

While the tissue samples were used for private laboratory experimentation without Henrietta's knowledge, you get the feeling that if she'd known about it, she would have agreed to it. She was by all appearances a kind, generous, giving woman, and probably would have readily agreed to donating her tissue if she thought it could help anyone. But the way they were taken is indicative of the tmes. They didn't need permission to obtain or retain tissue or organs from you during surgery or procedures, if obtaining such wasn't harmful to the patient. And a time when there were rumors of white doctors kidnapping blacks on the streets around John Hopkins and doing research and experiments on them. This was not a totally preposterous idea:
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 so on the same campus-- and at the very same time-- that state officials were conducting the infamous Tuskegee syphilis studies. (page 106)
The idea was revolutionary. The Hippocratic Oath, written in the fourth century BC, didn’t require patient consent. And though the American Medical Association had issued rules protecting laboratory animals in 1910, no such rules existed for humans until Nuremberg. (page 137)
And with the way that the Lacks family was misled and even lied to, who can blame them for their mistrust of the medical and scientific community?

Perhaps the most indelible character in the book, aside from Henrietta herself, is that of Henrietta's daughter Deborah, who is the toughest for Rebecca to win over, and yet their relationship grows to be the deepest and most significant. On a personal level, one of the things that I loved most about Deborah were her attempts to do what was best for her kids, and her desire to educate herself and to understand more of what happened to her mother's cells and what they meant to science and medicine.

Another character that made an impression on me, though not really in a good way, was Dr. Alexis Carrel. He made history with his immortal chicken heart. Unfortunately he wasn’t concerned with his landmarks in science and research benefiting mankind at large.
He was a eugenicist: organ transplantation and life extension were ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite. He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else. He’d later praise Hitler for the “energetic measures” he took in that direction. (page 71)
The feebleminded and the man of genius should not be equal before the law,” he wrote. “The stupid, the unintelligent, those who are dispersed, incapable of attention, of effort, have no right to a higher education. (page 72)
I think his research is probably the basis for the spooky Chicken Heart “ghost story” that my friend used to tell when we were kids, a story which I think she got from Bill Cosby. The book alludes to a 1930s radio horror show that fictionalized Carrel’s research.
But the fear of tissue culture truly found its way into American living rooms in an episode of Lights Out, a 1930s radio horror show that told the story of a fictional Dr. Alberts who’d created an immortal chicken heart in his lab. It grew out of control, filling the city streets like The Blob, consuming everyone and everything in its path. In only two weeks it destroyed the entire country. (page 73)
I loved the names of the family members that made up this story and I noted at one point “Who needs fiction with colorful characters like these?”
Young Day was what the Lacks family called a sneak baby: a man named Johnny Coleman had passed through town; nine months later Day arrived. A twelve-year-old cousin and midwife name Munchie delivered him, blue as a stormy sky and not breathing. (page 32)

My final word: This book brings to life a woman who died over 60 years ago, and tells Henrietta's story and that of her family with compassion and respect. The book is easy to follow, and isn't muddied with complicated scientific principles or language. The author is a layman, and she writes this story as a layman. This book is great for a controversial book club read, as there are so many ethical questions in regards to what the doctors did and how the scientific community has benefited from Henrietta's cells, while her family can't even get medical care.

And to shine a final light on the far-reaching arms of HeLa cells...
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. (page 17)

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