Skloot: The Immortal Life of Henrietta Lacks

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Rebecca Skloot, The Immortal Life of Henrietta Lacks. New York : Crown Publishers, 2010. x + 369 pages; 8 pages of plates; illustrated; includes bibliographical references and index.

• New to me author? Yes
• Read this author again? Yes!
• Tearjerker? A little teary eyed
• Where did it take place? US
• FTC Disclosure: Borrowed from the library at work

Publisher's Summary

"One of the most graceful and moving non-fiction books I've read in a very long time" -- Dwight Garner, New York Times. "Skloot's book is wonderful -- deeply felt, gracefully written, sharply reported. It is a story about science but, much more, about life" -- Susan Orlean, author of The Orchid Thief.

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer whose cancer cells - taken without her knowledge - became one of the most important tools in medicine. The first 'immortal' human tissue grown in culture, HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta herself remains virtually unknown, buried in an unmarked grave. Now Rebecca Skloot takes us on an extraordinary journey in search of Henrietta's story, from the "coloured" ward of Johns Hopkins Hospital in the 1950s to East Baltimore today, where her children and grandchildren live, and struggle with the legacy of her cells. Full of warmth and questing intelligence, 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.

First Sentence

There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape.

Why did I pick this book?

I first heard about this book on a online forum. It sounded interesting enough that I put it on my to-be-read list. Thought I'd read it sometime later as I have a big piles of books to read yet. However, I saw that my workplace was going to have a book discussion about it -- I work in a pretty big healthcare company so I thought it'd be interesting to talk about this book with others from the same field. So I bumped this up to be read first so I can participate in the discussion.

My thoughts

• If you are just going to read one non-fiction book this year, read this book! To sum it up in one word - FASCINATING! I didn't quite know what to expect, I thought it may be a little dry since it's about science and cells and cells research ... but it is a lot more than that. It is about ethics, patient rights, race, family and love as well. One of the participants in the book discussion put it quite well together -- this book is a bridge -- it helps non-scientists understand a bit of science (and make us more aware of our rights as patients too) but at the same time it helps scientists to understand the human side of the story. There were definitely parts of that books that made me ached, amused and cried. Skloot's writing made this a very easy-to-read book.
• I learned a lot from this book -- I guess that's why I like reading non-fiction because I get to learn about things I normally won't. While I was in school, I read fiction to escape, but now that I am not in school, I read non-fiction to keep on learning. I was not disappointed with this book. I didn't know about the Tuskegee syphilis experiment, The Hospital for The Negro Insane, that scientists inject cancer cells in patients to see if the cancer will spread, that the cells are named after the patient it comes from -- with the first two letters from the first name and the first two letters from the last name -- e.g. Henrietta Lacks' cells are known as HeLa.
• I didn't quite like the cover when I first saw it -- it certainly didn't make me want to pick it up to take a look. But now that I have read the book, I understand the photo and the orangey background.
• Skloot took over 10 years to put the book together, and it required a lot of persistence, bravery, patience and courage. The book did go back and forth a little in terms of time line -- to tell both Henrietta's story and Henrietta's daughter's story (her name was Deborah, nicknamed Dale). Henrietta died when Dale was one. I liked that it had a timeline at the top of each chapter to let you know which year each chapter was set at.
• Wired magazine has a timeline of what HeLa cells were used for throughout the years -- all the different vaccine and research on genetics and space biology and others
• The story also made me a little sad -- poverty, lack of education, lack of access to medical needs... One of the main individuals in the story died the day after Mother's Day in 2009. I finished reading this book the day after Mother's Day in 2010. What a coincidence.
• The most touching scene for me involved Henrietta's son Joe/Zakariyya and Christoph Lengauer and Rebecca Skloot, after seeing his mother's cells for the first time, and after Christopher explaining what a cell and DNA and chromosome is. And how HeLa helped cell research. It is hard to explain why it was touching without giving the story away. But it provided some closure for him and he showed his appreciation in a way that I didn't expect. His sister, Dale, said to Skloot afterward, "Girl, you just witnessed a miracle." (p267)
• The "afterword" was quite long and a little dry -- I'm glad the rest of the book wasn't written in the same manner! Since I had to return the book the next day, I didn't really read every word here....
• There were 10 pages of acknowledgment! It also includes an extensive list of sources that Skloot cited.
• I am going to include A LOT OF quotes - Some of the quotes may be SPOILERS - so be aware if you don't want to find out what happened. I am including them as a reminder to myself of the different things I learned in the book.
• I'd rate this book as a 4.5. Why not a 5? Only because I haven't decided if I need to go buy this book and own it yet. And I don't know if I'd re-read.

Quotations

Henrietta's Immortality

"Henrietta's cells have now been living outside her body for longer than they ever lived inside it," Defler said. If we went to almost any cell culture lab in the world and opened its freezers, he told us, we'd probably find millions -- if not billions -- of Henrietta's cells in small vials on ice. [p. 4]

"It sounds strange," he said, "but her cells done lived longer than her memory." [p. 118]

Race

Years later I'd understand how a young boy could know why I was calling just from the sound of my voice: the only time white people called Day was when they wanted something having to do with HeLa cells. But at the time I was confused. [p. 54]

A few minutes later, seemingly out of nowhere, he pointed to the dirt and said, "You know, white folks and black folds all buried over top of each other in here. I guess old white granddaddy and his brothers was buried in here too. Really no tellin who in this ground now." Only thing he knew for sure, he said, was that there was something beautiful about the idea of slave-owning white Lackses being buried under their black kin. "They spending eternity in the same place," he told me, laughing. "They must've worked out their problems by now!" [p. 122]

When I arrived in Clover (in VA in 1999), race was still ever-present. Roseland was "The nice colored fellow" who ran Rosie's before it shut down; Bobcat was "the white man" who ran the mini-mart; Henrietta went to St. Matthew's, "the colored church." One of the first things Cootie said when I met him was, "You don't act strange around me cause I'm black. You're not from around here." [p. 124]

Ruby (and Carlton Lacks, the oldest white Lackses in Clover, in 1999) was in her late eighties too, with a sharp mind that seemed decades younger than her frail body. She talked right over Carlton, telling me about their grandfather who'd farmed the Lacks Plantation, and their relation to Ben and Albert Lacks. When I mentioned that Henrietta came from Lacks Town, Ruby straightened in her chair. "Well, that was colored!" she snapped.
"I don't know what you talking bout. You're not talking about coloreds are you?"
I told her I wanted to learn about both the white and black Lackses.
"Well, we never did know each other," she said. "the white and the black didn't mix then, not like they do now, which I can't say I like because I don't think it's for the best." She paused and shook her head. "Mixing them like that, during school and church and everything, they end up white and black get together and marry and all... I just can't see the sense in it." [p. 125]

Ethics

The Tuskegee syphilis study -- they recruited hundreds of African-American men with syphilis, then watched them die slow, painful, and preventable deaths, even after they realized penicillin could cure them. The research subjects didn't ask questions. They were poor and uneducated, and the researchers offered incentives: free physical exams, hot meals, and rides into town on clinic days, plus fifty-dollar burial stipends for their families when the men died. [p. 50]

In February 1954, Southam loaded a syringe with saline solution mixed with HeLa. He slid the needle into the forearm of a woman who'd recently been hospitalized for leukemia, then pushed the plunger, injecting about 5 million of Henriettta's cells into her arm. Using a second needle, Southam tattooed a tiny speck of India ink next to the small bump that formed at the HeLa injection site. That way, he'd know where to look when he reexamined the woman days, weeks, and months later, to see if Henrietta's cancer was growing on her arm. He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else's malignant cells.
Within hours, the patients' forearms grew red and swollen. Five to ten days later, hard nodules began growing at the injection sites. Southam removed some of the nodules to verify that they were cancerous, but he left several to see if the patients' immune systems would reject them or the cancer would spread. Within two weeks, some of the nodules had grown to 2 cm -- about the size of Henrietta's rumor when she went in for her radium treatments.
Southam eventually removed most of the HeLa tumors, and those he didn't remove vanished on their own in a few months. But in four patients, the nodules grew back. he removed them, but they returned again and again. In one patient, Henrietta's cancer cells metastasized to her lymph nodes.
Since those patients all had cancer to begin with, Southam wanted to see how healthy people reacted to the injections, for comparison's sake. [p. 128]

Southam began injecting prisoners in June 1956 using HeLa cells that his colleague, Alice Moore, carried from new York to Ohio in a handbag. Sixty-five prisoners -- murderers, embezzlers, robbers, and forgers -- lined up on wooden benches for their injections. Some wore white hospital garb; other came off work gangs wearing blue dungarees.
Some tumors grew on the prisoners' arms just as they'd grown in the cancer patients. The press ran story after story about the brave men at the Ohio Penitentiary, praising them as "the first healthy human beings ever to agree to such rigorous cancer experiments." They quoted one man saying, "I'd be lying if I said I wasn't worried. You lie there on your bunk knowing you've got cancer in your arm.... Boy, what you think about!"
Again and again reporters asked, "Why did you volunteer for this test?"
The prisoners' replies were like a refrain: "I done a girl a great injustice, and I think it'll pay back a little bit what I did to her."
"I believe the wrong that I have done, in the eyes of society, this might make a right on it."
Southam gave multiple cancer cell injections to each prisoner, and unlike the terminally ill patients, those men fought off the cancer completely. And with each new injection, their bodies responded faster, which seemed to indicate that the cells were increasing the inmates' immunity to cancer. When Southam reported his results, the press hailed them as a tremendous breakthrough that could someday lead to a cancer vaccine. [p. 129]

And though the American medical Association had issued rules protecting laboratory animals in 1910, no such rules existed for humans until Nuremberg (in 1947, a ten-point code of ethics now know has the Nuremberg Code.) [p. 131]

The Hospital for The Negro Insane

The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population of Crownsville was at a record high of more than 2,700 patients, nearly 800 over maximum capacity. In 1948, the only year figures were available, Cronwsville averaged 1 doctor for every 225 patients, and its death rate was far higher than its discharge rate. Patients were locked in poorly ventilated cell blocks with drains on the floors instead of toilets. Black men, women, and children suffering with everything from dementia and TB to "nervousness," "lack of self-confidence," and epilepsy were packed into every conceivable space, including windowless basement rooms and barred-in porches. When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren't separated by age or sex, and often included sex offenders. There were riots and homemade weapons. Unruly patients were tied to their beds or secluded in locked rooms. [p. 275]

I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of fluid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects -- crippling headaches, dizziness, seizures, vomiting -- lasted until the body naturally refilled the skull with spinal fluid, which usually took 2 to 3 months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s. [p. 276]

Love for a mother

Christoph [Lengauer], a Ph.D. student who'd used HeLa to help develop something called fluorescence in situ hybridization, otherwise known as FISH, a technique for painting chromosomes with multicolored fluorescent dyes that shine bright under ultraviolet light. To the trained eye, FISH can uncover detailed information about a person's DNA. To the untrained eye, it simply creates a beautiful mosaic of colored chromosomes.
Christoph had framed a 14x20" print of Henrietta's chromosomes that he'd "painted" using FISH. It looked like a photograph of a night sky filled with multicolored fireflies glowing red, blue, yellow, green, purple and turquoise.
"I want to tell them a little what HeLa means to me as a young cancer researcher, and how grateful I am for their donation years ago," he wrote. "I do not represent Hopkins, but I am part of it. In a way I might even want to apologize."
Deborah threw her black canvas tote bag onto the floor, tore the wrapping paper from the photo, then held the frame at arm's length in front of her. She said nothing, just ran through a set of French doors onto a small patio to see the picture in the setting sunlight.
"They're beautiful!" she yelled from the porch. "I never knew they were so pretty!" She walked back inside clutching the picture, her cheeks flushed. "You know what's weird? The world got more pictures of my other cells than it do of her. I guess that's why nobody knows who she is. Only thing left of her is them cells." [p. 235]

Christoph kept talking about cell division, but Deborah wasn't listening. She stood mesmerized, watching one of her mother's cells divide in two, just as they'd done when Henrietta was an embryo in her mother's womb.
Deborah and Zakariyya stared at the screen like they'd gone into a trance, mouths open, cheeks sagging. It was the closest they'd come to seeing their mother alive since they were babies. [p. 265]

Then she knelt on the ground, next to the sunken strips of earth where she imagined her mother and sister were buried. "Take one of me and my sister by her and my mother's grave," she said. "It'll be the only picture in the world with the three of us almost together." [p. 287]

"I often visit her hair in the Bible," Deborah said into the camera. "When I think about this hair, I'm not as lonely. I imagine, what would it be like to have a mother to go to, to laugh, cry, hug." [p. 309]

Wisdom

Lurz sat in his chair, legs crossed, looking at the photo of Elsie. "You have to be prepared," he told Deborah, his voice gentle. "Sometimes learning can be just as painful as not knowing." [p. 271]

As we left Crownsville, Deborah thanked Lurz for the information, saying, "I've been waiting for this a long, long time, Doc." When he asked if she was okay, her eyes welled with tears and she said, "Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different." [p. 276]

"Man brought nothing into this world and he'll carry nothing out. Sometime we care about stuff too much. We worry when there's nothing to worry about." [p. 289]

-- Notes by CMF