I need to stop saying I don’t like nonfiction and start saying I enjoy immersive nonfiction. It seems the majority of nonfiction works that I do like are those that delve deeper into societal issues from a different perspective, like The Immortal Life of Henrietta Lacks (Amazon Associates Link).
This was a fascinating read and it constantly reminded me of an updated (more micro-focused) version of Stephen Jay Gould’s The Mismeasure of Man in which he discusses and shows the errors of many scientists whose procedures created ultimately racist data. If you enjoyed Skloot’s work you should definitely check out Gould’s, although it’s not as much about the personal stories behind the family and behind Skloot’s interest in this subject which makes Skloot’s work more approachable to the general public.
I’m not surprised it took me this long to actually get a copy of the book, but I’m sad it did. This was a fascinating read about the family’s personal issues, the ethical issues, the scientific issues of the infamous HeLa cells and Skloot’s personal story and relationships to all of it. What I found most fascinating was the evolution of the scientific community over time and how much has changed since the cells were first gathered in the 1940s/50s. I think that science and research are vitally important to the continuation of society, but I have to agree with something Skloot said in her afterward,
“The debate over the commercialization of human biological materials always comes back to one fundamental point: like it or not, we live in a market-driven society, and science is part of that market.” (loc 5519)
This really highlighted what I think a major problem in all of society is these days: the monetary value and the ability of super rich (or super big) companies to patent something and then force others to pay hundreds of thousands (if not millions) of dollars to work with it. Skloot’s examples of various types of cancers and the few examples I know of diabetes, AIDS and other drugs which are too expensive for many people to use and cheaper alternatives are not discovered because of patents really drives me mad.
If there was one thing that bothered me about the book it was the keeping of the accents and the direct dialogue. I know Skloot did this to keep things as true as possible, but I’m not sure if it did Deborah a disservice. She was clearly an incredibly intelligent woman who if given the opportunity could have done any number of things, but her portrayal throughout made me feel like she was a lost little child (which she was in a way), but it sort of left a funny feeling as I was reading.
However, I must say I truly appreciate that Skloot followed through on her foundation for descendants of Lacks and others like them whose parents or grandparents made significant contributions to science by creating the Henrietta Lacks Foundation. It hasn’t been around long enough to get a look at their finances online, but I would definitely be interested in finding out how much it’s worth and what size grants they give out.
Recommendation: Whether you’re interested in science, medical ethics, African-American history, women’s history, cancer, or just an interesting read you will enjoy this book. I haven’t taken a hard science since high school and there were only a couple of occasions where I had to actually search for context clues (and often times it the following sentence explained it).
Opening Line: “There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape.”
Closing Line: “‘But I tell you one thing, I don’t want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that’s just sad.’ Then she smiled. ‘But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.’ She paused and nodded again. ‘I think I’d like that.'” (Whited out.)
“Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment.” (29)
“‘Now I don’t know for sure if a spirit got Henrietta or if a doctor did it,’ Cootie said, ‘but I do know that her cancer wasn’t no regular cancer, cause regular cancer don’t keep on growing after a person die.'” (82)
“Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal.” (89)
“It wasn’t routinely taught in medical schools, and many American researchers—including Southam—claimed not to know it existed. Those who did know about it often thought of it as “the Nazi code,” something that applied to barbarians and dictators, not to American doctors.” (131)