Imagine you feel really, really sick, as if something is growing inside you but you don’t know what it is. Now imagine that there’s only one hospital in your city that will see you as a patient: it’s 1951 and you’re an African American woman with very little money. So you go to the clinic and the doctors tell you that the “hard spot” in your “lady parts” is, in fact, cervical cancer. As a treatment for your cancer the doctors sew radium-filled tubes into the affected area, leave the tubes there for a few days (maybe a week), remove them, and then subject you to x-ray treatments that burn your entire torso.
And you die anyway.
Before they start the treatment, though, the doctors remove tissue samples from your cervix as part of their ongoing efforts to find human cells that will grow in lab cultures. The doctors don’t tell you they’re taking tissue samples and they don’t tell your family that your cells grow and grow and grow–are, in fact, immortal. The cells taken from your cancerous tumor are so vital that they are still used–scientists have grown something like twenty tons of your cells.
You are Henrietta Lacks and your cells, HeLa, have been the basis of some of the most profound scientific discoveries of the late 20th century, including the polio vaccine, cloning, and in vitro fertilization. But until Rebecca Skloot, a science writer and journalist, started to piece together the story of the HeLa cells, no one knew the story of Henrietta Lacks or of her family, who still live in and around Baltimore and who, until relatively recently, couldn’t even afford health insurance, despite the fact that their mother/sister/grandmother had provided the essential component for so much of modern medicine.
When this book arrived in my library reserves shelf, I almost didn’t bother to check it out; the reviews had been good but it was science. How could a science book be interesting? Mostly these days, I don’t much like non-fiction. As I creep increasingly closer to 50, my brain is such a sieve that really, any new information just leaks out and dribbles down the back of my neck, so why bother reading non-fiction, which is so generally crowded with, you know, facts.
But this book, The Immortal Life of Henrietta Lacks (which you can get from Amazon just by clicking through on that nifty little widget just over there on the right side of the page), is perhaps one of the best books I’ve read this year (and that list includes both Wolf Hall and The Girl Who Kicked the Hornet’s Nest, just to give you a sense of what I mean when I say “best” ). A science book that is also a page turner; a page turner that is also an amazing chronicle of scientific research; a discussion of scientifici research that is also an examination of bio-medical ethics and social justice.
Think about it: the scientistis didn’t tell Henrietta they were taking her cell tissue. Should they have? And if they did tell her, then what? Does she own that tissue and then is her family owed something from the literally thousands of patents that have been developed using her cells for research? What if, after a routine procedure to remove a little mole or something, a doctor discovers in that mole something that could be used to advance medical research? Does the removed tissue belong to you? To the doctor? Does the doctor even have to tell you, given that you went to the doctor to have this excresence removed in the first place?
Rebecca Skloot spent years making contact with Henrietta’s family; she talked to relatives, friends, children, neighbors, and devoted I can’t even imagine how many hours sifting through medical reports, journals, and doctors’ files. From all this material, Skloot tells the story of how the amazing developments in science and medicine over the last sixty years rest, quite literally, on the body of a woman so obscure that she’s buried in an unmarked grave, in a town that no longer exists. Henrietta’s story itself would make a compelling book, but Skloot also incorporates the story of Henrietta’s family, who remained completely in the dark about Henrietta’s importance in the scientific community until almost fifteen years after her death, and then wrestled not only with Henrietta’s legacy but also with the problems associated with being poor and uneducated in a small town in rural Maryland.
But enough of my blathering. Just go click on the Amazon link over there and buy the book. And the next time you go to the doctor’s office for a “routine procedure,” ask yourself how you’d feel if you found out, decades later, that your doctor became famous from some discovery she made based on examining your body parts.