Well, the book group met again last week, this time with appropriate refreshments (the wine from my personal cellar), and the attendance was triple what it had been the first time. The latter was related as much to the time of the day (17:00) as to the vittles. The discussion regarding The Immortal Life of Henrietta Lacks was quite spirited. The two favorite characters were, first, Rebecca Skloot (the author), who had published a number of magazine and journal articles, but this was her first effort at a book. Her dedication and perseverance were notable. Second was Henrietta’s daughter Deborah, the primary source of information and inspiration. She was the glue that held together this dysfunctional family. The topic that engendered the greatest discussion was surprisingly associated with the least controversy. For those readers of CAHO who are not familiar with the story, Henrietta goes to Johns Hopkins for treatment for her terminal cervical cancer. Her tumor becomes the first human cancer able to be cultured and becomes known as HeLa cells. Billions of dollars have been made from her cells, but her family never saw a shilling. I posed the question, “Was that right, was it fair?” I was startled that everyone present—nurses, fellows, and faculty—agreed that what leaves the body no longer belongs to the source. The issue naturally arises that her cells were so unusual that one can question their relevance to the real world. One of the fellows didn’t really think that the HeLa cell story was any big deal, because some other cell line would have come along and been the first. However, that really has not been the case. Nevertheless, as detailed in a previous Letter From the Editor (CAHO, June 2010), these cells have, over the decade, played an unrivaled role in science, from the polio vaccine to the HPV vaccine. They helped to teach us how genes are turned on and off, setting the stage for gene therapy; how HIV infects cells; and the use of G6PD screening for clonality. Scientists learned how to culture various cell lines, but also how contamination could be a research-destroying problem. Work done with her cells led to at least 2 Nobel Prizes. Henrietta made her contributions, albeit unknowingly, which provided Deborah some consolation. But when she died, there was no reason to reward her family in any monetary manner other than, potentially, through the foundation the author has set up for them. I had fully expected one of the group to cry “Unfair,” that they deserved their share. But, I was surprised and not disappointed. They recognized how paying patients for their samples would have a deleterious impact on research. There was also unanimity of the negative influence that the HIPAA regulations have had on clinical studies, as well as those never-ending, overly informing consents. Were they all too callous? Personally, I think not. Finally, a tremendous impression was made on the group by Deborah’s feeling that a bit of her mother was still alive in all of those cells that were populating laboratories around the world. That she truly had become immortal.
We then had a discussion regarding the next book. I had received most appreciated suggestions from readers of CAHO. However, for now, I decided on Jerry Groopman’s How Doctors Think. I wish someone would tell me since it is not clear that it is always the same way that I do! It is described on the Amazon website as “myth shattering.” We shall see what we can learn about our relationship with patients and how they can help us “avoid snap judgments, embrace uncertainty, communicate effectively, and deploy other skills that can impact our health.” Perhaps in the future it will be The House of God. I would love to reread it now that so much that I related to at the time it was published would be inconceivable for doctors of the current generation.
My conviction to continue to have these book groups was supported by an e-mail from one of our fellows the following day: “Thanks for continuing the book series – that was a great time last evening but also addressed some important, yet underaddressed, topics in our training.”
Until next month . . .
Bruce D. Cheson, MD