Wednesday, July 27, 2011

The Immortal Life of Henrietta Lacks

I am a reader by heart, but sometimes, something happens to me where I am unable to read more than a short article, here and there. It took me years to understand that there was actually a pattern: every time I'd read something stunning, my mind couldn't let it go. It was as if I could not read anything else for a time, out of respect for the book. I know, I know, it sounds crazy, especially when we're talking about fiction. But, sometimes, there is something about the subject matter, or the brilliance of the writing, that I simply can not let go. I used to be irritated by this, because I'd WANT to read, but couldn't. Later, I came to see this as blessing, because it meant I'd read something really fantastic. When I've been lucky, I've gone for a year, reading only a couple of books, meaning they were all incredible.

The last time this happened to me, I'd read Margaret Atwood's Year of the Flood over Christmas in 2009, and I haven't read much since. Last Tuesday, I walked into a bookstore I'd never been in before, and a store clerk took one look at me, ran up to me holding a book and said "oh my GOD, YOU HAVE to read this book!" He went on to give a summary of the story, and for some reason, it did not feel like a sales pitch. It turns out he was right: I did need to read this book. Having read this story, I can feel that it will occupy my thoughts for some time, and that it will be awhile before I'll step into another book store.

In 1951, a woman Henrietta Lacks was diagnosed with cervical cancer. Without her knowledge and consent, tissue was extracted from the tumor growing on her cervix. To the shock of the researchers in the hospital where she was treated, the cells from this tissue not only lived outside the body, but they thrived, and they reproduced themselves at an astounding rate, never seen before. Bought and sold over time, Henrietta Lacks cells continue to be the dominant cell strain used in all forms of tissue research around the world. Her cells helped develop the polio vaccine, went into space several times, and were instrumental in research which revealed how the HPV virus causes cervical cancer. In this manner, Mrs. Lacks lives on, probably in most of us, 60 years after her death.

The marvel of this story comes to an abrupt end when we consider that no one ever asked Henrietta, or her family, following her death, if they wanted her cells to live on and be utilized in countless experiments. They weren't even TOLD that this was happening, and they found out 20 years later, purely by accident. And certainly no one ever asked if they felt entitled to remuneration resulting from the commercialization of her cells. In fact, the Lacks family continues to face financial challenges in their lives, and can not even afford health insurance. This is but one of many indicators that the modern world was built on the backs of those considered inferior in some way.

Following decades of watching personal details of their mother's life and illness parade across the media, and of being preyed upon by various journalists, and in one case, a con artist, the Lacks family entrusted their story to journalist Rebecca Skloot. Ten years in the making, Skloot's obviously careful and extensive research, as well as the relationships she built with the Lacks family form the foundation of a book that reads like a novel you can't put down, all the while recounting the facts of this incredible story, interwoven with Skloot's reimagining of pivotal points in Henrietta's life which were recounted to her by the family.

You might think a story like this couldn't take place today, because we have laws to protect patient's rights. You would be wrong, as I was. There is no law requiring consent for storing tissues for the purposes of research and/or commercialization. Read that again. This means that whenever you have your tonsils out,  get a mole removed or just give blood during your annual physical, it doesn't belong to you anymore. Time and again, the courts have ruled that your tissues can be reserved for any medical purpose, and should your tissues have any commercial value for any purpose, you are not entitled to remuneration. This is at least the case in the United  States, and I will research the matter in Canada.

And the reason there is no law? Well, it's not exactly clear, but the biggest arguments of the scientific community seem to be that it might cost them too much, and it might be tough to keep everything organized. The origin of tissue samples is irrelevant to science, and at this time, science is at liberty to do what they will.

I'm glad I learned about Henrietta Lacks. It never once crossed my mind to consider where cell cultures come from, and I never imagined it was basically one person who enabled this whole arm of medical research.

Here's a weird thought: maybe Henrietta Lacks connects us all at the most basic level of our cells...

Learn more about Henrietta Lacks
Visit the fan page for the book on Facebook
Support the Henrietta Lacks Foundation