The book is about Henrietta Lacks, who was poor, black, uneducated, and living in the Baltimore area. When she discovers she has cervical cancer, she is treated at Johns Hopkins which treated charity cases. It should be noted that this was in the late 1940s, before HIPAA laws, detailed informed consent forms, integration, etc. Her situation was unusual in that this was a research hospital and there was a researcher looking to develop cell lines for tissue culture. Because of this situation, they took her removed tumor and used it to develop a cell line. However, the actual treatment she received and the fact that doctors didn't ask for permission to do study on discarded tissue was not usual, class or race aside. The bit of cancer that was removed from Henrietta Lacks lead to the development of the HeLa cell line which has been extremely important in biological research. Truly, these cells were game changers. However, despite the success of HeLa cells, the Lacks family has not fared so well.
The issue I had with the book was the implied controversy. "The HeLa cells made millions but the Lacks are poor! No one knew who Henrietta Lacks was! They invaded her privacy! Despite all the research, she still died from her cancer!" The author plays with timelines, shifts the story around. I suppose it could be just clever writing, but I also think it's an attempt to make controversy when none is there. Putting two facts next to each other doesn't make them related. This is bad reporting and, frankly, just stirring stuff up. (For example: I walked to work this morning and there were free donuts in the pantry. Both things are true, but they aren't related. My walking to work did not result in free donuts. Although that would be kind of awesome.) This book loves to group some pretty awful low-points in medical ethics (such as the Tuskegee Syphilis Experiment) with what happened here, which is nowhere near each other. Henrietta Lacks was treated to the standard of the time, but she died of her cancer anyway. This is sad, but no medical ethics were compromised here.
It bothers me that the book so badly wants to make members of the scientific community the bad guys. Research is hard. It's frustrating. Sometimes you have a theory that should work, but, for some unseen reason, it just won't happen in the lab. Sometimes you have years when you work your tail off and all you have to show for it all is a big hunk of nothing. Working in a lab takes skill and determination and some smarts and (as much as we hate to admit it) luck. The group that developed the HeLa cells into a cell culture line demonstrated this. And, even though it took all of that, they gave away a lot of HeLa cells for free. They were extremely generous. The author found one scientist who felt that the Lacks family should have profited from these cells (I'm guessing that other scientists did not share this view) and she makes a big fuss over this. It would have been nice to have the other side of the argument presented.
It should be pointed out that it is illegal to sell body parts, something the author buries towards the end of the book, almost as an afterward. In fact, if Henrietta Lacks was in a clinical study where they took her tissue for further research, the amount of money she would have gotten would have been minimal (and the same for all people who had tumors taken from them, whether or not a cell line lived.)
It sucks that the Lacks family has health issues and no insurance. But it sucks that anyone in the US is in that situation. It sucks that their mom got cancer when they were really young and then they were raised by people who abused them. I agree that the forward march of science shouldn't trample someone's rights, but, as interesting as this story is, this was not the case of greedy scientists stealing body parts from a poor, black woman.
2 comments:
It's not shocking to me that I had not previously heard this story. Using only your blog as all of my facts it seems that while it is an interesting story, it's certainly not a controversial one.
Was it at least well written?
It was very well written and an interesting story. It just had an element of sensation I felt wasn't necessary.
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