The Immortal Life of Henrietta Lacks by Rebecca Skloot
Others have reviewed this for Cannonball Read already, so here are the basics in case you missed it: Henrietta Lacks was a black woman who died at Johns Hopkins, where she had been admitted due to complications from cervical cancer. She had radium treatment at one point, and when she received the treatment, a biopsy of her tumor was taken at the request of a researcher. From there, the cells were cultured and became some of the first that would grow, and keep on growing, in a lab, making them perfect for testing all sorts of things, including the polio vaccine that helped eradicate the disease from the U.S. The problem is that she never knew about this (nor did she consent), and her family didn’t find out until about 25 years later. While researchers and biomedical companies were making history (and money), Henrietta’s descendants were mostly poor, without much secondary education or even basic health insurance.
The author, Rebecca Skloot, is a white woman who first learned about the “HeLa” cells in high school. She wanted to know more about the woman behind the cells, and spent over a decade writing this book – she tracked down medical records, met with researchers, and eventually was able to spend lots of time with Henrietta’s children and grandchildren, helping them to learn more about the mother they didn’t ever get a chance to know.
This book is fascinating in many ways. The first is just the sheer quality of Ms. Skloot’s storytelling. She weaves the present and the past together seamlessly, finding clever and logical ways to intertwine the research, the history, and the science so that the book flows really well.
It is also a great book for those of us interested in biomedical ethics. Once we part with something that was once connected to us, does it stop belonging to us? Do we have any right to demand that our tissues not be used in ways that we might find objectionable? What about genetic mapping – if my DNA is found to be really helpful in some sort of research, am I obliged to be okay with that research? Are my (hypothetical) kids obliged to be okay with research that is traceable to their genetic code? And can we ever really consent when the alternative to saying “sure, use my cancer cells” may be that they don’t remove the cells? These issues are mentioned throughout the book, but get a more thorough review during the afterward, where one particularly douchey Harvard researcher seems to think that research matters above all else. Which, who knows, maybe he’s right, but he doesn’t make any legitimate argument about it.
Finally, the book is fascinating in the most important way a non-fiction book like this can be – it tells us about a real, flawed family that has been devastated not just by the loss of their matriarch decades ago, but by the realization that her cells live on in ways they never imagined and didn’t entirely understand in the beginning. It’s a glaring statement about the priorities in this country when a person can ‘donate’ cells that very seriously changed the medical world forever, but her family can’t afford health care for themselves. There’s so much here about racism, classism, and elitism that I could write a thesis on it. But instead I’ll just leave you with the strong recommendation that you pick up this book.