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.
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.)
Additional Quotes from The Immortal Life of Henrietta Lacks
“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)
Loved this book. It’s one everyone should be reading both for its strong narrative as well as its ethical dilemma.
I agree. I found it difficult to write about (as I do with most books) because there are so many things we can focus on as we’re responding to the books we read. I barely touched on the ethical dilemma portion and yet it was fascinating.
I love this book, too. I read nonfiction of all kinds, but I particularly liked the narrative nonfiction form of this book and The Warmth of Other Suns by Isabel Wilkerson. You should check that one out, as well.
I’ll definitely have to add it to my list and hopefully one day get to it. So many books! But it will help I’ll put it on my suggested books list and that’ll provide some guilt.
I’ve sort of avoided reading this book because it received such a huge amount of coverage in the science press when it first came out that I got sick of it. However, everyone I’ve talked to agrees with you that it’s really good, so I definitely should read it at some point.
On The Mismeasure of Man, you might be interested to know (or maybe you already do) that a later set of scientists went back and studied the set of skulls that Gould remeasured and found that Gould’s measurements were wrong and the original measurements were correct. That doesn’t negate Gould’s larger point, but it does indicate that scientific results might not be quite as prone to bias as Gould portrays.
I know what you mean about over exposure.
I know they rereleased the book, but it wasn’t the measurements which were the issues in my opinion. I thought it was more the lack of consistent materials/tools and the practices. And the over dependency of physiology which is determinate of intelligence/ability. It’s been almost 8 years since I last read it in full.
I actually haven’t read the book in full ever, just read about the controversy over the skull measurements, so I defer to your judgement as to their significance.
Haahaa. I’m not sure when the controversy happened. I just remember my professor focusing more on the actual tools used rather than the measurements themselves.
so glad you enjoyed it!
It was great! I wanted to find out even more.
In fact no matter if someone doesn’t know after that its up to other visitors that they will help, so here it happens.
I read this book with my book group and enjoyed it more than I thought I would. I’m not sure how you really place these kinds of books, they’re non fiction but they have a narrative. Kinda like the docu-dramas you can get, which are set out like a documentary but with actors playing the parts, still with historians (normally) talking about it. I never really liked those – I just like a straight documentary to be honest. So, whilst I did enjoy this and prefer these types of ‘easy’ non fiction, there was part of me that wished she’d sound more non-fiction and less of the descriptive narrative style.
I was more interested to find out more about how pharma companies make money through selling and exploiting people’s genes like this, the ethical question of that, rather than the race issue.
I agree. I’m sure there’s a term like pop-psychology but for the life of me I can’t think of what it is for history or scientific novels.