My Mother's Hairbrush and the Immortal Life of Henrietta Lacks [On Becoming a Domestic and Laboratory Goddess]

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I received a copy of Rebecca Skloot's new book The Immortal Life of Henrietta Lacks before Christmas. I read it while my family and I traveled to Phoenix and have thought about it almost every day since. It's gotten coverage around these parts, and yet I have struggled for the words to describe just how deeply her book affected me.  So, before I share with you the things I experienced reading this book, I want to be sure to give you my review:

This is, without a doubt, the single best piece of non-fiction I have ever read.  It is one of the most important stories of the last 100 years and should be required reading for every scientist and physician-in-training.

In short, I loved it and consider myself among Rebecca Skloot's biggest fans.

From an article in the Smithsonian Magazine:

Medical researchers use laboratory-grown human cells to learn the intricacies
of how cells work and test theories about the causes and treatment of diseases.
The cell lines they need are "immortal"--they can grow indefinitely, be frozen
for decades, divided into different batches and shared among scientists. In
1951, a scientist at Johns Hopkins Hospital in Baltimore, Maryland, created the
first immortal human cell line with a tissue sample taken from a young black
woman with cervical cancer. Those cells, called HeLa cells, quickly became
invaluable to medical research--though their donor remained a mystery for
decades. In her new book, The Immortal Life of Henrietta Lacks,
journalist Rebecca Skloot tracks down the story of the source of the amazing
HeLa cells, Henrietta Lacks, and documents the cell line's impact on both modern
medicine and the Lacks family.

I remember being both an undergraduate and graduate student and learning that HeLa cells were derived from the donated cervical cancer tissue of a woman named "Helen Lane."  I have memories of seeing and touching HeLa cells, never thinking of their origins because they seemed so benign. 

Henrietta-David-Lacks-1945-388.jpgFigure 1: The most important woman in biomedical research with her husband David.

The reality is that the cervical cancer tissue that later gave rise to the immortal HeLa cell line was taken from Henrietta Lacks, a poor black tobacco farmer, and used in research without her consent or the knowledge of her family.  Pictures of her cancer and her medical records have been disclosed.  Rebecca describes how Henrietta's family came to learn about the formation of HeLa cells in the Smithsonian interview.  She says:

So a postdoc called Henrietta's husband one day. But he had a third-grade
education and didn't even know what a cell was. The way he understood the phone
call was: "We've got your wife. She's alive in a laboratory. We've been doing
research on her for the last 25 years. And now we have to test your kids to see
if they have cancer." Which wasn't what the researcher said at all. The
scientists didn't know that the family didn't understand. From that point on,
though, the family got sucked into this world of research they didn't
understand, and the cells, in a sense, took over their
lives

The aftermath of this event - the informing of Henrietta's family about the existence of HeLa cells - is a central theme of the book and one that resonated strongly with me.   I had the good fortune of meeting Rebecca at ScienceOnline, where we had the opportunity to sit and chat over lunch.  In speaking with her, it became incredibly clear how well she had come to know this family and what a strong bond she had formed with them, especially Henrietta's daughter Deborah.  This is reflected in her writing and, indeed, I would not have had the response I had to the book were it not for Rebecca's description of her interactions with Henrietta's family.  Although I hadn't met her until ScienceOnline, I developed a respect for Rebecca in seeing the dignity with which she treated Henrietta's family in her book - a family that had clearly been treated as subjects instead of people.

Reading about Deborah Lacks was painful for me.  Like Deborah, I lost my mother when she was in her 30s.  There is so much of my mother I don't remember.  As an adult I have formed relationships with the adult members of my family (my father, aunts and uncles, grandparents) that are different and richer than the relationships we shared when I was a child.  I have frequently mourned the loss of that relationship with my mother and wondered about what she was really like.  When she died, one of her few possessions that I received was her hairbrush.  I clung to that hairbrush, with the strands of her auburn hair tangled in the bristles, as the last tangible part of her, for years.  Those strands were as real a part of her, tangled in the hairbrush, as they had been while among the other thousands on her head.  Those little pieces of her.  Insignificant to everyone but me.  I understand how Deborah could see these cells as a real part of her mother. 

I also remember the event of her dying.  The flurry of last minute medications, the tubes, the fluids, the devices, all carefully documented by the medical establishment in a manila folder.  And the last moment of holding her hand and saying goodbye, documented by no one but me.  I can't imagine how I would react to find these records, stripped of her personhood, disseminated with out my knowledge and the pictures of her published to satisfy scientific curiosity.  

When I began this post, I thought about writing about how I interpreted this book as a scientist performing human research and discussing the finer academic aspects of informed consent. We can discuss the conduct of science later because each time I think about Henrietta's family I come back to the incredible hurt this single event caused them and believe that warrants a discussion mention independent of the use of the HeLa cell.   This book is a reminder of the responsibility we have to treat each other with dignity, and the importance of considering how our interactions affect those who may not share our cultural values. Rebecca's prose is artful, the details factually and scientifically accurate, and her ability to move to me tears took me by surprise.  As someone who has held a piece of Henrietta Lacks in my hands, The Immortal Life of Henrietta Lacks made me want to reach out to Henrietta's family, tell them how very sorry I am, and how incredibly thankful I am for what their mother gave us.

 You can purchase your copy through any of the major vendors.  Rebecca has committed a portion of the proceeds from her book sales to the Henrietta Lacks Foundation - a scholarship fund designed to:

provide financial assistance in the form of scholarships to the descendants of
Henrietta Lacks, giving those who have benefited from HeLa cells -- including
scientists, universities, corporations, and the general public -- a way to show
thanks to Henrietta and her family, while helping her descendants receive the
education that generations before them weren't able to afford.

Given available funds, in addition to providing support for members of
Henrietta Lacks's family, the foundation will seek to provide financial
assistance to other African Americans in need who are pursuing education in
science and medicine.

You can also donate directly by visiting Rebecca's website. 

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