Thursday, May 03, 2012

The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks was our book club selection for this month - it was also, coincidentally, the book selection of the year at the college where I work.  So there have been a lot of lectures and whatnot about the book in town recently (not that I like, went to any of them...)  I'd heard all this stuff about the book like how remarkable it is and so on, but I was quite disappointed.  The story of Henrietta Lacks eternally dividing cells and the impact they've had on scientific research is pretty remarkable, but the story that Rebecca Skloot has told is problematic, to say the least.

Henrietta Lacks was a woman who had cervical cancer and died in 1951.  Her cells, it was discovered, are "immortal" - they reproduce easily and have been widely utilized in scientific experiments around the world (they're called HeLa cells).  Lacks or her family was never notified that her cells were being used in this way.  She was an impoverished, uneducated, southern African-American woman and her family, even today, continues to suffer in poverty, ill-health and under-education today.  (As a side-note, it was interesting to read this book in conjunction with the national conversation about wealth and bootstraps - the Lacks family is a perfect example of how the poor stay poor.)

Skloot is very much a part of her own narrative - the journey to learning more about the life involved trying to talk to her family.  Henrietta's family, by 1999, had been burned many times by reporters and members of the medical community - Henrietta's surviving children and husband were never informed about their mother's place in scientific importance, and, being very poorly educated, they did not seem to understand exactly what had happened to her, before or after her death.  Skloot describes the process of talking with the family, particularly Henrietta's daughter, Deborah, an erratic women that vacillated between eagerness to talk about her mother and learn more, and sudden skittishness and privacy about her family matters.

What really comes across in this book is the extreme irony that the family of this woman who made such an important contribution (without her knowledge) toward medical science continues to live in poverty and, for example, has no health insurance.
"Hopkins say they gave them cells away," Lawrence yelled, "but they made millions!  It's not fiar! She's the most important person in the world and her family living in poverty. If our mother so important to science, why can't we get health insurance?"
However, what bothered me more and more was how this book was less about Henrietta's history and cells, and more about what a completely ignorant and superstitious family she had.  While so much of the book was devoted to how Henrietta, as a poor, black woman was considered fair game for medical experimentation without her knowledge or consent, I found it rather alarming how much of the family's bizarre, idiotic statements were included in what felt like the further advantage-taking of this family for someone else's gain.
"Daddy," Lawrence yelled, "did you know mam's cells gonna make Stevie Wonder see?" [...] Then there was a thump on the ceiling and the rustling of someone walking around, and Lawrence jumped from the table and ran into the kitchen. "My wife is a fire dragon without morning coffee," He said. "I better make some." It was two in the afternoon.
Skloot also describes the surviving family members' appearances, skin tone and texture with obsessive detail:
Deborah was a substantial woman - about five feet tall and two hundred pounds. her tight curls were less than an inch long and jet black, except for a thing streak of natural gray framing her face like a headband. She was fifty, but seemed both a decade older and younger at the same time. Her smooth light brown skin was dotted with big freckles and dimples, her eyes light and mischievous.  She wore capri pants and Keds sneakers and moved slowly, leaning most of her weight on an aluminum cane. 
Historically, the assumed character for white writers are white, while any non-white characters are the "other" and "require" description.  This started to drive me nuts after a while in this book because the players were either medical professionals or Lack's family.  The Lacks' skin tone, eye-brightness, and obesity was almost always immediately and indulgently described while those characteristics were not mentioned for the scientists unless they were not white.

I don't think that's uncommon, but just illustrates how unconsciously white writers (and readers) carry their own (even unknown or unrecognized) prejudices.  However deeply problematic I found The Immortal Life, it seems to have sparked a conversation for an ethical and legal issue that will most likely become more and more prevalent to our society.

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