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Tuesday, March 29, 2011

What I'm Reading: The Immortal Life of Henrietta Lacks

Last year's consensus best book of the year was The Immortal Life of Henrietta Lacks by Rebecca Skloot.  Maybe it was all the hype, but I have to disagree.  I was underwhelmed at best.  I think my main problem is that I was NOT shocked by the fact that Johns Hopkins stole a poor black woman's cells and used them for research without informed consent.  In 1951, poor black people were not treated well.  And guess what, they still aren't.

Another huge problem I had with this book is that Skloot put too much of herself into the story.  For example, when describing a barrage of phone calls she had been receiving from Henrietta's daughter Deborah,  she inserts info about herself having the flu.  Rebecca, I don't care about you, I am following the story of Henrietta's family.

This is all not to say that I didn't like the book.  I thought it was good. It had some very memorable scenes and it was extremely entertaining, but it did not scream Best Book of the Year to me.  I felt like people were surprised by the subject matter and were impressed by how readable and fair Skloot's treatment of it was.  Good for her, but should it be the best book for these reasons?

But the point of  my reviews here is to talk about who would like this book and why, not how I feel. So here is the review that you can use to help readers.

The Immortal Life of Henrietta Lacks is an interesting read because it tells 2 distinctly different stories in one well flowing narrative.  Here is part of the official book description from the publisher:
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. 
Let me start by talking about the science writing.  Skloot does an excellent job of explaining both the medical research, how cells are kept in culture, how HeLa cells were used to solve very real health problems, and how they are transported.  She makes what could be highly technical very readable.  She turns the science into a journey.  She is our tour guide as we are led through a normally closed world.

The science part also includes a discussion on the evolution of medical ethics and the rise of "informed consent" as opposed to just plan consent.  Skloot uses examples other than Henrietta to underscore the scope of the problem.

The other major plot line is that of the life of Henrietta Lacks, probably the most important person in modern medical research, yet also the most unknown.  Skloot presents Henrietta's family history, her terrible battle to fight the cancer eating away at her, and the husband and children she left behind.  Skloot leaves no stone unturned here as she meets and interviews every living member of the Lacks family she can find, while also tracking down the truth behind those that have died.  The story of this one American family is equal in importance to the scientific part here.

Skloot's own journey as a writer, spending ten years of her life on this story is a third plot line here too.  Her life became entangled with the Lacks' in a way that means she will forever be connected to them.  She needed them to write this book, but it also seems that they needed her to move toward forgiveness and personal healing.  Their interaction, especially those between Rebecca and Deborah Lacks, make for some of the most moving scenes in the book.

The best thing about this book is that Skloot does not judge anyone.  All sides have their good and bad here, and Skloot treats all equally.  She could have started demonizing the scientists or making too many excuses for the Lacks family, but she did not.  I commend her for that.  Her fairness is indisputable.

This book has a very intimate tone.  It's scope is surprisingly large too.  It spans about 100 years.  It is a social history of one poor, black family.  It is a scientific history of the most important group of cells in the world.  It is a discussion on medical ethics.  And, it is the story of a writer chasing a story, looking for answers and resolution to questions which might not ever be fully answered.

Three Words That Describe This Book:  intimate, medical research, family

Readalikes:  This book is tricky for readalikes because you really have to get at the "WHY" someone enjoyed this book in order to make a good suggestion.  So, I will break my suggestions up in to larger areas of appeal.  But first, here is Skloot's official web page which includes more resources.

If you liked the descriptions of medical research I would suggest Life Itself: Exploring the Realm of the Living Cell by Boyce Rensberger, The Proteus Effect: Stem Cells and Their Promise for Medicine by Ann B. Parsons, and Chasing Medical Miracles: The Promise and Perils of Clinical Trials by Alex O'Meara. (Thanks to NoveList for these suggestions)

If you liked how Skloot made you think about medical ethics I would suggest Brave New Bioethics by Gregory E. Pence.

Atul Gawande is a doctor and journalist who writes quite a bit about the medical world including personal history and ethics.  For those who want a larger view of modern American medicine and medical research, try anything by Gawande.

If you want more information on how African Americans have been treated by the medical world I would suggest Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study edited by Susan Reverby or Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet Washington.

If you liked the social history aspects of the story and the descriptions of Henrietta's family and the injustice they lived through try The Help By Kathryn Stockett for a look a historical fiction look at the life of black women during the years just after Henrietta died.  For a strict social history of African American life try the work of Henry Louis Gates and Cornel West.  Both are scholars who write readable social history about every aspect of African American life.

For readers who want more memoirs of how a family deals with cancer try About Alice by Calvin Trillin, It's Not About the Bike: My Journey Back to Life by Lance Armstrong, and Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer by Nancy G. Brinker.

I think that is plenty.  Happy reading.


The Mom (Amy) said...

Wow, thanks for all the information. I was thinking about reading the book, but uncertain --I just put it on hold @ our library-- I am curious and intrigued...

I love your insights, as always!

Anonymous said...

It is such an interesting thing having this post of yours. I was interested with the topic as well as the flow of the story. Keep up doing this. bzp