Monday, July 18, 2011
The Immortal Life of Henrietta Lacks by Rebecca Skloot
This non-fiction work that reads somewhat like a novel tells the story of Henrietta Lacks -- a black woman who died of a very aggressive cervical cancer (perhaps triggered by an HPV infection) at Johns Hopkins at the age of 30 in 1951. Doctors removed a piece of her malignant tumor and grew it in a culture medium transforming the cells into the immortal HeLa line still used for research purposes today. The author seeks out Henrietta's family and focuses her attention on the sons and daughters, specifically daughter Deborah, and their reaction to finding out that those cells grew into a billion dollar industry without them receiving the compensation they feel they deserved.
I didn't "love" this book as many others seem to. My perspective is different though I empathize with the sons and daughters of Henrietta who did not understand what happened to their mother nor were explanations given to help them see the fact that these tumor cells were not a "part" of their mother's normal body tissues nor their legacy. No one to this day knows why those particular malignant cells -- medical waste that is normally disposed of after diagnosis -- became so prolific.
Although I think the author depicted what she saw and heard directly from the Lacks family, and how sorry she personally felt for their situation, I do not think that the family deserved any compensation for the money made from those tumor cells for this reason: the cells alone were worthless; it was only because of the scientific community that they became valuable and allowed researchers to make hugely important and life-saving discoveries because they could use them for experiments instead of live humans. If the family had been given the tumor cells instead of them being given to Dr. Gey, what would they have done with them? Should they have been asked, yes indeed, but at that time and place there was no such thing as informed consent and tumor cells were considered trash to be used for making the diagnosis and then thrown out.
I do not think that the Lacks family was exploited more than any other person who had a malignant tumor or other tissue removed and I do not think that Henrietta's cell removal was deliberate or only done because of her race. I would postulate that any person's tissues that were so abnormal would have been of interest to scientists at that place and time. Perhaps the real crime here is that Henrietta never told her family what was wrong with her, the doctors who treated her never met with the husband or children to offer any medical information, and they were left without knowing the full story. No one really knew what exactly had happened to Henrietta; they didn't understand what she died from or why the treatment didn't work. The sad story here is that this family didn't ever know anything about their mother and thus were left in a void of ignorance. Times were different then and many changes have been made so that this type of thing is unlikely to happen again. I guess the real question is whether or not people who read the book feel that the Lacks family was intentionally wronged and that the doctors and scientists should have not used those cells that went on to help make lifesaving treatments that benefited all of humanity. The cell line didn't make money until much time and work was invested in them.
Yes there are many interesting moral and ethical issues that come up every day in biological science. Those who work in this field walk a very thin line between what can be done vs what should be done. I don't envy them.
Because of the inception of informed consent this situation won't likely occur again. I hope that the book at least helps people who aren't familiar with how tissues and cells removed from the body might be used to make their own personal decisions about its use. New procedures and technologies in the rapidly changing world of medicine make it essential that every person undergoing care and treatment take it upon themselves to investigate, ask questions and ensure their own understanding.
After you read the book you can reflect and make your own decision about what happened.