Am I a “ghost in the machine”? Am I a wetware machine? What is consciousness? A soul or an epiphenomenon? Are my cells mine? Can someone patent my DNA?
Every generation has its own questions: the history of human thought presents not only new answers to old questions, but new questions too, and even though the big ones are always there, they can be voiced in different ways.
Henrietta Lacks’ story bridges a major shift in scientific possibilities and therefore in issues around medical ethics. Henrietta herself was almost lost in the big sweep. She was, however, a real woman, who died a painful death from a particularly nasty form of cancer, leaving young children who never got over their loss of their mother. Author Rebecca Skloot spent years getting to know the family, especially Henrietta’s daughter, Deborah, until Deborah’s death. It was hard to break through the distrust that had built up between the family and the medical establishment. In the 1950s, at Johns Hopkins, not much could be done for Henrietta’s cancer, nor, apparently, for her pain, but the cells taken from her cervix were able to survive and replicate in lab. conditions. As HeLa these cells were passed on free to other researchers, but eventually became a major industry, used in research into polio, into effects of various pharmaceuticals and so on, profitable to many- but never to Henrietta’s family, who didn’t even have health insurance. “Informed Consent” was just becoming a norm before treatment, but it was much later before tissue- rights activists began to challenge the use of human cells and tissues without consent or remuneration. This is still at issue. Examples are given in the book of cases where a patient knew his tissues had economic value and were able to control their use. How many issues are raised in this paragraph? And I have not mentioned Henrietta’s oldest daughter, who was taken to a Hospital for the Negro Insane where she died young.
The family’s questions include the awareness that many people had become wealthy from their mother’s cells, with a healthy amount of anger that they were left out. Becuse of the author’s ten-year relationship with the family, though, she is aware that the loss of their mother, and the lack of understanding of the medical realities of cell replication were major issues, too. Eventually she took Rebecca and her brother Zakariyya to meet a researcher who had them look at HeLa cells under the microscope. This was a moving experience of beauty, of feeling close to their mother, of knowing her cells were helping medicine.
I found it rather puzzling that Rebecca felt her mother was immortal because of those cells. She even thought, because of reading an estimate of how many cells had been replicated, that there were clones of her mother walking around somewhere. Distressing. She struggles, throughout the book, to understand the scientific concepts involved ( all the family had been to extremely poor schools). Then I remembered our son, at about seven years old, in a museum with an Egyptian mummy, in Bolton, Lancashire, I think. He was fascinated and weirded by the mummy- couldn’t leave it- couldn’t turn his back on it. Later, at home, he told his dad or me that he was uneasy because he thought the person was hovering over the mummy somewhere. Still there. Pretty close to Egyptian thinking of 4000 years earlier. We can see life leaving the eyes of a person or animal, and feel that individual is no longer there- but what follows? Where is that individual, now “gone”?
I am so not answering that question. Maybe after another book.
Most of us would not feel, as I do not feel, that biopsied cells are “me”. But I am not a ghost, hovering: I am a living body, and cannot imagine not being aware of my body and experiencing the world through it.( Here insert lectures on Descartes, Berkeley,Locke, Hume et al.)
Oliver Sachs, in this early work, writes of his own experience, after a nearly fatal mountain experience which led to weeks in hospital with a badly injured leg. The leg disappeared from his internal “body map” in a way that he researched later with patients who had brain injuries. He writes, from his experience, about the alienness of the dead limb: not dead as in numb after anaesthetic, but as in “not there”. His loss of his previously automatic awareness of his own body/himself was a dark night for him. Perhaps it helped him become the sympathetic, listening doctor he became. The man who could write “The Man who Mistook His Wife for a Hat” and could make you feel that he was talking about real people and how they coped with conditions that could not even be adequately explained, much less cured. This recent generation has learned so much about the brain, but has so many big questions still unanswered. Fascinating to read and think about.
Great advances have been made in medicine. Philosophers have pondered. Legislators have tried to formulate new rules.
No new answers for you. Sorry! I would enjoy your thoughts though.