Rebecca Skloot's The Immortal Life of Henrietta Lacks is a non-fiction account of the woman whose cancer cells – which have been growing ever since 1951 when a sample of the tumor was put in a petri dish – became known as HeLa and have been used in medical research for the last 60 years.
The science part of the book about how the HeLa cells have been used was amazingly interesting. As one could guess, the cells have been used to study cancer, DNA, infectious diseases, and a myriad of other medical conditions. Even more fascinating was how, in dealing with the indomitable HeLa cells, scientists developed uniform protocols for working with cell lines. For example, they developed a common, pre-mixed medium for growing cells; figured out how to ship vials of cells; learned that cells could be frozen and then thawed later for further research; and organized centralized, often privatized, tissue banks for tracking and selling cells and other tissue samples.
Skloot also examines the medical ethics and personal privacy issues raised by human tissue research. While there is some contrary evidence, it seems clear that no one discussed with Henrietta that they had taken her cells for research, and no one got her consent beforehand. It was 1951, and the concept of "informed consent" was barely nascent. Skloot tracks the changes in public awareness and concerns about patients' rights from Henrietta's day to the present – a present in which most of the questions remain unresolved.
The downside of the book, for me, was Skloot's use of Henrietta's family. She started off trying to learn about Henrietta's history, and ended up writing about Henrietta's children, primarily her daughter Deborah. There is no doubt that, while the science made the book interesting, the family's story made it compelling.
But as I reached the end, I felt that the family's story was compelling for the wrong reasons. Henrietta's five children – the offspring of syphilitic first cousins from a long line of inbred first cousins – all suffered to one degree or another from congenital deafness and learning disabilities. The oldest daughter was sent to and died in an institution. The youngest son went to prison for murder, later lived in an adult foster home, and displayed ongoing anger and other mental health problems. Deborah, the focus of Skloot's attentions, told Skloot that she was schizophrenic and had an anxiety disorder and showed all the signs of a bi-polar disorder as well. At least one of the other brothers and one grandson had drug-related criminal histories.
Reading about these people was like watching a train wreck. It was impossible not to get sucked into their story. But what made their lives such a train wreck was not that a doctor took a sample of Henrietta's cells and other scientists have been using them for research. There is no cause and effect connection.
True, Henrietta's children were bothered by not understanding how, or even the fact that, Henrietta's cells were being used (whether this lack of understanding was the fault of the scientific community or the result of their own cognitive limitation is open to debate), but that issue would fit in a chapter. Instead, Skloot laid out every personal detail of these people's lives – physical and mental health issues, marital problems, religious views, addictions, and criminal involvement – for us all to pore over.
I walked away from the book with the feeling that it was more exploitive of Henrietta's family than the scientific community had been. Skloot may have been motivated by sympathy for the family and a desire to tell a story people would read, but if we are going to judge on motives and not actions, then the doctors and scientists Skloot holds up to criticism should be similarly judged by their primarily good motives. And at least the scientists didn't make me directly complicit in the exploitation.
Judging from the debate at my Book Club, my take on this book is not shared by others. If you would like your review listed here, please leave a comment with a link and I will add it.