Review: "The Immortal Life of Henrietta Lacks" by Rebecca Skloot
With eight folks present, we had a lively, far reaching discussion of The Immortal.... The discussion ranged from WOWEE!! medical facts, medical ethics issues, to questions of racial and class discrimination, to personal experiences dealing with power relationships in the medical community. The book was very highly rated by the group---an average of 4.8 out of 5 for readability and interest combined. But I digress.
The book centers around a unique line of cancer cells taken from an African American woman---Henrietta Lacks---who was diagnosed and subsequently died of cervical cancer in 1951. All of us were amazed at the raw size of the cell line and the myriad research uses to which her cells were put--unparalleled in modern biological science. The cells replicate constantly and voraciously and have to date produced approximately 50 million metric tons of cellular material for research. Neither she nor any of her descendants received any compensation for her cell line, a line that has made billions of dollars for the medical community.
The last statement stimulated a good discussion on the ethics of compensating people for their own biological material. On the one hand, the medical establishment made billions of dollars from her cells, but her family lived in or close to poverty and most could not afford basic health insurance. Where's the fairness in that? On the other hand, the courts have affirmed that such material is essentially "medical waste" over which the donor has no ownership rights. In part this is to ensure that people in desperate straits are not tempted to sell body parts or blood just to get by. And it reduces the chances of active markets in body parts, say from prisoners, by corrupt officials. Medical folks also argue that marketing biological tissue, including Henrietta's cells known as HeLa cells, would dramatically increase the cost of medical research to the detriment of all. We came down on the side of perhaps some compensation for Henrietta's family, but at minimum at least some public recognition for her singular contribution to medical science.
In general we thought that the laws governing compensation for donors was probably stacked in favor of the medical establishment, including drug companies that profit mightily from such "medical waste". We didn't necessarily feel that race or class had figured into the equation, though in general it's easier for institutions to "push around" poorer, less educated folks.
Would Henrietta have approved of how her cells were used? We felt that she probably would have. But also saddened that her descendants had not benefitted at all.
The author interjected herself extensively into the HeLa story. Was this appropriate? Generally we felt that was appropriate because a major piece of the story was her detective work and extraordinary persistence in uncovering both the families and the medical communities stories. She spent 10 years writing the book.
Our conversation turned to some personal experiences with the medical Industry. Ron had direct experience with the HeLa cell line in producing a therapy for someone close to him. Others had experiences where medical practitioners exerted great power over people's decisions to have certain procedures done (John's requirement for very extensive and invasive testing in order for him to continue flying) or remain silent about effects of or exposure to shelling and agent orange in wartime. Even with the signing of certain documents prior to medical procedures often represents a power imbalance that most of us may have experienced.