I read The Immortal Life of Henrietta Lacks recently, a masterful book about the real-life story of a woman named Henrietta Lacks who died of cervical cancer in the 1950s. Before her death, Henrietta’s cancer cells were collected by doctors at the Johns Hopkins Hospital and it was found that they had a remarkable capacity to grow and proliferate. The sheer scale of the scientific achievements that followed and which owed a measure of credit to HeLa, as the cells came to be known, is immense. The crux of the book, however, is that Henrietta Lacks never gave informed consent to the harvesting of cells from her body.
Towards the end of the book, the author juxtaposes Henrietta’s case with that of other individuals, like Ted Slavin, who recognise the potential that parts of their bodies have for research and medical advancement, and ensure that they have control over who uses the tissue in question and under what circumstances.
The following text from the book, centred around these examples, is one of the best enunciations of the dilemma of informed consent that I have read:
“This is a capitalist society,” says Wayne Grody. “People like Ted Slavin took advantage of that. You know, the way I see it is, if you think of doing that on the front end, more power to you.”
The thing is, people can’t “think of doing that on the front end” unless they know their tissues might be valuable to researchers in the first place. The difference between Ted Slavin, John Moore, and Henrietta Lacks was that someone told Slavin his tissues were special and that scientists would want to use them in research, so he was able to control his tissues by establishing his terms before anything left his body. In other words, he was informed, and he gave consent. In the end, the question is how much science should be obligated (ethically and legally) to put people in the position to do the same as Slavin. Which brings us back to the complicated issue of consent. [emphasis from the text]