Wednesday, January 12, 2011
Book Review - The Immortal Life of Henrietta Lacks by Rebecca Skloot
I’ll be the first to admit, I don’t particularly enjoy reading non-fiction. Biographies of my favorite writers and artists, and in some cases, musicians, are fine (I’ll read almost anything about Emily Dickinson, for example, or the painters of Renaissance Italy), but I avoid most other non-fiction and stick to fiction. The Immortal Life of Henrietta Lacks, however, just sounded to tempting to pass up.
The Immortal Life of Henrietta Lacks tells the story of many things: cancer, racism, medical ethics, the effects of poverty on medical care, and most of all, the story behind the prolific “HeLa” cells and the real person who unknowingly donated them – Henrietta Lacks. The book’s author, science journalist, Rebecca Skloot, first heard of Henrietta Lacks when she was a sixteen-year-old student and a biology instructor mentioned Lacks’ name and skin color to her (Skloot) but nothing else. Skloot, however became curious about the person, Henrietta Lacks as well as “HeLa,” and she spent ten years researching and gathering material for her book, with much of that time being spent gaining the trust of Lacks’ family, who, for good reason, are skeptical of any Caucasian and anyone even close to the medical profession.
Henrietta Lacks, the great-great-granddaughter of slaves, began life in her grandfather’s cabin on a poverty-stricken tobacco farm in Clover, Virginia. She was, according to those who knew her, a lovely woman with “walnut eyes, straight white teeth, and full lips.” She was fun, and she was fun to be around. Her cousin, Emmett Lacks, describes her as the “sweetest girl you ever wanna meet, and prettier than anything,” and that’s exactly how she comes to life in the pages of Skloot’s book.
By early 1951, Lacks had moved from Virginia and was living in Baltimore, Maryland. She and her husband had five children and Mrs. Lacks was suffering from what she termed a painful “knot on my womb.” The only place a black person could obtain medical treatment in 1951 Baltimore was at Johns Hopkins. Mrs. Lacks checked into their charity ward and was promptly diagnosed with cervical cancer. She was given painful, scarring radium treatments, but before the first one was administered, the attending physician, without asking permission from Mrs. Lacks and without even informing her, cut two dime-sized pieces of tissue from Lacks’ cervix – one that was cancerous and one that was healthy. The doctor then gave the tissue samples to George Gey, a scientist who had been trying to establish a continuously reproducing, or immortal, human cell line for use in cancer research. Lab protocol dictated that that an abbreviation of the donor’s name be written on the tubes. Mrs. Lacks’ cells thus became known as “HeLa” for her first and last names.
Previously, no human cell line had survived outside a human body, but “HeLa” succeeded where all other human samples had failed. Mrs. Lacks’ cells not only survived, they prospered and multiplied with lightning speed. It was later discovered that they contain an enzyme that prevents them from automatically degenerating like most “normal” cells do. The “HeLa” cells, due to this enzyme, are thus capable of dividing and multiplying forever, rendering them “immortal.”
Gey gave some away to other researchers. Scientists grew Mrs. Lacks’ cells in mass quantities in order to test the Salk polio vaccine. They were used to promote advances in chemotherapy. They helped in the development of cloning, gene mapping, and in vitro fertilization. They helped researchers understand that normal human cells have forty-six chromosomes. They aided in the study of herpes, leukemia, Parkinson’s disease, and AIDS. The “HeLa” cells were even used to learn how nuclear bombs affect human beings, and they were sent up in the first space missions in order to see how human cells are affected in zero gravity. In short, “HeLa,” in great measure, launched virology as a viable medical field.
Mrs. Lacks’ cervical cancer was a particularly aggressive type, and she died from the disease at the age of thirty-one. Sadly, no obituaries of her appeared in any newspaper, and this woman who, albeit unwittingly, did so much to advance medical science was buried in an unmarked grave. (To be fair to the medical community, Mrs. Lacks’ cancer was so aggressive that it probably could not be cured today, let alone in 1951. Though it was obscene for blacks to be denied treatment at any place other than Johns Hopkins, Henrietta Lacks almost certainly did not die from a lack of medical care.)
Today, sixty years after Henrietta Lacks’ untimely death, her tissue has yielded approximately fifty million metric tons of “HeLa” cells. Stretched end-to-end, all of the “HeLa” cells, would today, circle the earth three times. A library of 60,000 studies exists that were performed with the “HeLa” cells and researchers add about 300 more each month. As Skloot says in her book, there are “trillions more of her cells growing in laboratories now than there ever were in her body.” In fact, today, Mrs. Lacks’ cells lead a life all their own. They’ve been used, not only in Gey’s research lab in Baltimore, but have been shipped to the Tuskegee Institute and to the “for-profit” Microbiological Associates, a part of the companies Invitrogen and BioWhittaker.
While medical and science students and researchers around the world instantly recognize the “HeLa” cells, very few people have ever heard of the woman who donated them, much less know anything about her. At her autopsy, a lab assistant glanced at her painted red toes and thought:
Oh jeez, she’s a real person...I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.
Mrs. Lacks’ own family, many of whom still live in East Baltimore, knew nothing of their mother’s famous cells and that people had grown wealthy from marketing them, until more than twenty years after her death when a Chinese-born doctor from Johns Hopkins showed up on their doorstep and demanded blood samples in order to better study and understand “HeLa.” Because this doctor spoke only limited and broken English and was unable to respond to Henrietta’s daughter Deborah’s questions, he handed her a textbook on medical genetics, instead. As a result, the Lacks’ feared they, too, had cancer and spent tension-filled weeks waiting on the results of a “cancer test” that never existed.
The Lacks’ weren’t being paranoid. They’d heard stories, some of them true, some not, about blacks being abducted in the dark of night and used for horrifying medical experiments. And then there was the infamous Tuskegee syphilis study in which poor, uneducated black men with syphilis were recruited for a study of the efficacy of certain drugs, then after the study, allowed to die horrifying and entirely preventable deaths because the doctors withheld life-saving penicillin from them.
Although one might think that Henrietta Lacks is the centerpiece of this book, she’s not. That role goes to her daughter, Deborah, a tough/sweet/vulnerable/generous woman, whose curiosity about her mother and her older sister, Elsie, who was born deaf, mute, and possibly retarded and lived out the fifteen years of her life at Crownsville State Hospital in Maryland (formerly the Hospital for the Negro Insane) finally drove Deborah to an emotional breakdown. And as we read, we can’t help but agree with Deborah, “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 drugstore!…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.” And the reader desperately wants Deborah, and all the Lacks’ to have that health insurance and more.
The most moving – and heartbreaking – scene in the book involves Deborah and a kind-hearted Johns Hopkins researcher named Christoph Lengauer, who managed to give Deborah and her family some closure regarding the loss of their mother.
Skloot includes a timeline at the beginning of each chapter, but even so, it’s sometimes difficult to keep track of what is happening when because Skloot skips backwards and forwards in time so much. She also has a tendency to end her chapters in Dan Brown like “cliffhangers,” I’m guessing, to propel the reader forward into the next. This feels a bit forced rather than graceful, and really, no cliffhangers are necessary. The story of Henrietta and Deborah and all the Lacks’ is compelling enough without cliffhangers.
Some reviewers have said this book reads more like a novel. I don’t agree. It’s lacking many devices of novelistic structure, but for me, that was fine. The book isn’t a novel and doesn’t present itself as one. The reader goes into it expecting non-fiction, and that’s what he or she gets.
Naturally, The Immortal Life of Henrietta Lacks raises difficult questions concerning medical practices and bioethics and informed consent. I think most readers are going to feel outrage over what happened to Henrietta and the poverty in which her descendants now live. Though it’s difficult, readers should keep in mind the fact that Johns Hopkins, and probably most other research facilities that worked with the “HeLa” cells weren’t committing any crimes. As Skloot notes, the question of payment for profitable tissues is still an unresolved issue, and it’s still not necessary to obtain a patient’s consent to store cells and tissue taken from them in diagnostic procedures and then later use that tissue for research.
The Immortal Life of Henrietta Lacks is a fascinating book for people interested in scientific or medical research, but its real achievement lies in it’s humane – and deeply human – look at both Mrs. Lacks and her descendants. It’s a wake up call to the medical community to remember that while they may be working with highly advanced technology and science, there’s a human being – a suffering human being, with people who love him or her – at the bottom of it all.
Recommended: This is a “must read” for those interested in science and medicine. It’s also compelling for anyone who loves non-fiction or just wants a change of pace. I applaud the author for her courage in writing this book.