Rebecca Skloot has enjoyed the wonders of hitting the New York Times best seller list with her first book, The Immortal Life of Henrietta Lacks. She deserves it. This is a book everyone should read in that everyone should know more about the scientific and ethical issues it addresses.
Henrietta Lacks was the woman from whom the HeLa cells originated. That meant absolutely nothing to me before reading this book. I’ve never engaged in any medical research (unless looking up my own symptoms on WebMD so as to self-diagnose counts).
These cells, it turns out, have been incredibly important to scientific research since the time they were first harvested from Lacks in 1951. They are cells from the cancer that killed her, and they appear to be as immortal as they were fatal. There are still cell lines used in laboratories today that derive from the original 1951 HeLa line. They just keep reproducing. They are unique in the way that they can be continually grown and reproduced in laboratories. Thus, they provide a plentiful supply of cells with which scientists can conduct extremely important medical research. They’ve been instrumental in any number of advances in medical research.
But they came from a real person who did not know she was donating them. Her family did not know the scientific world was growing and selling and experimenting with her cells over and over into perpetuity. While medicine advanced because of Henrietta’s cells, her children did not even have medical insurance.
It’s a fascinating story. Skloot does a good job of balancing the scientific facts with the human story. She also does a good job of analyzing the complexities of the ethics of cell harvesting with the knowledge or consent of the patients and the need for scientific advance. And, by the way, while Henrietta’s story is unique because her cells are unique, the practice of taking cell samples for medical research without the knowledge or consent of the person they came from is more common than you might think.
It’s common, but that does nothing to diminish the impact of Henrietta’s story. Nor does it alleviate the degree to which her family comes across in this book as having been absolutely exploited in the name of science.
I’m not entirely sure they were further exploited for the sake of science reporting. At times I felt uncomfortable with Skloot’s narrative. I felt like I was being told things she shouldn’t have told, things that were a violation of the trust this family had placed in her when they let her close enough in to learn their story.
I’ll leave that question for other readers to ponder. Aside from my own feeling of general creepiness over the amount of private information shared about the Lacks family in this book, I found the story incredibly compelling.
It certainly left me with a lot to think about. I won’t say more for fear of spoiling the book for others, but if you don’t know the story of Henrietta Lacks, you should, and Skloot’s book is probably the best place to start.
A local family has a child going through cancer treatment. She was misdiagnosed by one of the labs and didn’t receive the correct diagnosis until a year later at St. Jude’s. After going through her lab reports and other medical files from the physician, St. Jude’s requested the actual sample from the biopsy taken in Hattiesburg. The lab refused. Even after repeated requests from the family, the lab says that the biopsy sample is their property and that the family gave their consent when they sign the paperwork for the biospy to be performed.
I say they’re covering their arses.