Monday, December 17, 2012

What does it mean to live forever?

Eleven bloggers before me have linked their reviews of The Immortal Life of Henrietta Lacks to the Audiobook Jukebox. That's one more (including me) than have listened to The Girl with the Dragon Tattoo, which seemed to be the audiobook du jour for the longest time. I have come late to Henrietta's party, but not without appreciation. This story is unlike anything I've ever read before and it is one pretty great audiobook. I will go on and on about it.

Rebecca Skloot is a young science writer who stumbled across the bare bones story of Henrietta Lacks when she was in high school. Over time, she researched it, but it was a chance encounter with an acquaintance of the Lacks family that enabled her to write this book. When Skloot was introduced to Henrietta's youngest daughter, Deborah, she saw the story she was meant to tell.

And that is partly the story of Henrietta -- a young mother of five who died of cervical cancer in 1951 when she was 31 years old. Her death was agonizing by all accounts, as it included radiation treatment that charred her abdomen. But during her time in the colored ward at Johns Hopkins Hospital, researchers scraped some of the cancer cells off her cervix and handed them to some lab workers. Unlike any other cells this lab had worked with, these cells (now called HeLa) survived, they went on dividing. And those lab researchers gave away the cells to other lab researchers, who have used HeLa over the past 60 years to make all sorts of important medical advances. Many research organizations that have HeLa cells now sell them to other researchers (although Johns Hopkins claims that its researchers never did).  There is doubt whether Henrietta gave consent (much less informed consent) to have her cells used in research, but her family only found out about the miracle of HeLa more than 20 years later.

And the impact on the family was dev-astating. Mostly poor and raised in a household that didn't talk much about Henrietta and how she died, the news that her cells had lived beyond her created several issues in the minds of her family.  The uninformed medical experimentation imposed on African Americans (most notably the Tuskegee study of the effects of syphilis on black men), the gap in care provided to black patients during the 1950s and in the 21st century (most of Henrietta's children developed health problems, but can't afford health insurance), and the simple fact that when the family was informed about HeLa, they were being asked to submit to medical experimentation themselves -- without the scientists ever bothering to answer their most basic questions. Without these answers, unreasonable fears arose -- particularly for Henrietta's daughter Deborah: Was it the radiation -- and not the cancer -- that killed her mother, was her mother at rest, was she in pain in the afterlife from all the testing of her cells, are her clones walking about?

Skloot befriends Deborah and part of this story is how she slowly gained Deborah's trust, and tried to address Deborah's fears by sharing what she learned. Even though Deborah did not live to see the publication of Skloot's book (she died in 2009), Skloot created a foundation in her (and Henrietta's) memory to help future generations of Lackses. She also asks important questions of all of us: What does it mean when we sign those informed consent forms? Who owns our tissue once it is removed from our bodies? Who -- if anyone -- should be able to profit?

I was deeply impressed by Skloot's doggedness. She just kept asking questions, looking for people, sometimes beyond sense. Her relationship with Deborah was fraught and occasionally she seemed to push the volatile Deborah inadvisedly. Most of her research took place in the 1990s when Skloot was still in her 20s and she seemed occasionally to forge ahead without regard for the consequences. A trip she took with Deborah to visit the mental institution Henrietta's oldest daughter was committed to as a child was horrifying, and it just got worse once they arrived at the small town where Henrietta grew up.  An exorcism was required.

Skloot is a palpable presence in this book; the story of her research is a critical part of her story. And Cassandra Campbell, the narrator, beautifully portrays her. She begins to read with the air of a dispassionate and young nonfiction writer, but as she gets more and more entangled with the Lacks family, Skloot's own emotions are vivid in Campbell's voice. She also does an outstanding job of reading with appropriate African American inflections, Deborah and other members of her family sound black without caricature. That exorcism scene (and that's what it was) involved Deborah's cousin calming her down by asking Henrietta to stop haunting her and Campbell's narration is chilling and powerful. It was impossible to stop listening.

The book includes a few short examples of Deborah's own writing and these are read by the reliable Bahni Turpin, who manages to portray all of Deborah's fear and weariness in just a few words. Skloot herself is interviewed as well, providing additional insights into her research and writing process. Among other things, she tells us that she originally began the book with the exorcism, but wisely moved it to a point where readers feel connected with Deborah and her struggles.

I haven't listened to much nonfiction this year (just these two, as a matter of fact), and I usually go in the opposite direction from anything science-based, but this book was followed by another science-y one. I'm not the first person to note that good nonfiction writers recognize the importance of story.  Henrietta Lacks had a remarkable story.

[The photo of Deborah with her brother's granddaughters came from Rebecca Skloot's website, where there are lots of other great pictures. This beautiful image of HeLa cells is from the February 4, 2010 issue of Nature and was retrieved through EBSCOhost.]

The Immortal Life of Henrietta Lacks by Rebecca Skloot
Narrated by Cassandra Campbell, with Bahni Turpin
Books on Tape, 2010.  12:31

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