The Immortal Life of Henrietta Lacks

I am in a non fiction phase and took out The Immortal Life of Henrietta Lacks after seeing good reviews of it everywhere. Mr TCM got slightly disturbed that I kept sighing through the book. It has a lot of ‘poor me’. The author really stretched out the ‘poor me’ stuff, detailing the process in writing this book. How difficult it was to talk to the family, where she traveled, how she was shut out, how she was welcomed, then not welcomed and welcomed again.

The science is a little thin – I would like it in more detail. I don’t know about HeLa cells. I want to know how it is used in the various areas of medicine. The discussions about medical research ethics and invasion of privacy came like an after thought. She talked about the circumstance around the family of Henrietta Lacks. Yes, they were poor, black, uneducated, and inbred but that alone is not interesting. In fact, I think the writer makes them a little unsympathetic. They keep repeating the tale of exploitation – how big cell factories made money off HeLa cells while the Lacks family continues to live in poverty. The family is not overly concerned about the ethics, the invasion of privacy. I keep hearing one thing. Money. They want some of the millions and millions that came from the HeLa cell factories. They want to be in the limelight, to talk about their mother yet, they didn’t know their mother.

Couple of questions that left me wondering
(1) if a bit of my cells get lopped off why aren’t they considered a bit of waste?
(2) if my body is capable of generating a particular thing (blood, shit, oil, etc) that can cure an illness, and I discover that a medical researcher made money off me selling that thing, is it unethical?

(1) it seems very unusual to consider them still my cells since I am alive and quite capable of living without them. (2) it is a little complicated. On first thought, most would say that doctor making money off me is not ethical because the blood/shit/oil/etc belongs to me, I should decide what to do with my body. If so, then those cells that are lopped off in (1) are from my body so I should decide what to do with them. Okay…what if I thought they were waste (and gave it away) when they were actually golden eggs, wouldn’t (2) become a non-ethics issue?

As I went through the book, I read many accusations that doctors, researchers didn’t explain stuff to the family. In those days, black people were terribly exploited because they were considered inferior. However, reading about how the Lacks family mixed up science with superstition, makes me wonder if some people tried to explain but they didn’t get it. They didn’t understand cancer, they didn’t understand HeLa cells, they didn’t understand a lot of things. I can’t see that they want to and are capable of understanding what is use of those cells. If the researcher had lopped off the cancer cells and had given it to the family as a present, they won’t not be capable of growing those cells and making those millions and millions. It’s not just them – most of us would dump it in the trash.