The Immortal Life of Henrietta Lacks
by Rebecca Skloot
I liked this book. I didn’t love it.
Which leaves me a little puzzled as to why this book did quite so well as it did. I mean, it’s popular science, so it makes an otherwise esoteric subject – in this case, the intertwined subjects of cellular research and medical ethics – more accessible to people; that, it does remarkably well. Skloot humanizes Henrietta Lacks, whose tissue was used to start the HeLa line of cells, which have been in constant and widespread use in medical research since the 1950’s when the cells were first collected, without Mrs. Lacks’s informed consent. The book is very good at helping us to understand the woman and her family and the impact that the medical research community had on them.
However, it doesn’t do a terribly good job of explaining the impact the Lacks family – or at least Henrietta – had on medical research. Which feels like a missed opportunity.
It’s an interesting story at the start: Mrs. Lacks had an aggressive form of cervical cancer, and was treated for free at Johns Hopkins Medical Center. The treatment, appropriate at the time, is horrifying to think of now; not much less horrifying is the idea that as part of it, doctors took tissue samples from Mrs. Lacks, one from a healthy spot on her cervix and one sample from the actual tumor, without informing Mrs. Lacks why they would be doing so. The sample from her tumor turned out to be the perfect cellular replicator, and it became a standard research tool over the next several decades; any time anyone needed some cells, they just had to order some HeLa samples from one of the several businesses that eventually made a fairly sizable profit from – well, from farming cells from Mrs. Lacks’s sample. The HeLa cells were used in all kinds of things from polio vaccine research to the Human Genome project; the science and the scientists behind it were the most interesting part of the book, at least for me. The woman herself died from her cancer, leaving behind a husband and five children; none of them had any idea that their mother had been turned into a medical experiment.
But from there, the story sort of goes off the rails. It’s understandable, because Henrietta Lacks died in the 50’s, and so cannot be a part of the current story; Skloot goes to the next best source: the Lacks family. And she tries very hard to humanize them, to allow us to understand how they feel knowing that their mother was used to supply labs with human cellular material for research, for profit, for decades after her death. The problem is that the Lacks family is kind of freaky.
I don’t mean to cast aspersions; anyone coming in to probably any family to get to know us and talk to us would likely have a strange view of the family; especially if the topic is, “So did you know that thousands of scientists have used cells grown fro your mother’s tumor in experiments?” But the Lacks family, while I sympathize with their situation, was hard to relate to. They are strangely religious, for one (At least more religious than me, which on a scale of 1-10 would be “Nuh-uh”), and have some ideas about their mother living on through her cells that I couldn’t relate to. They switch between wanting to get their share of the money made from their mother, since they all live in some level of poverty and ill health, and just wanting their mother recognized for her vital contributions to medical science, to wanting all of the doctors to pay for what they did. It made me jump around from agreeing with them to raising an eyebrow, and so it made them seem strange, to me. Then I felt guilty (still do) about finding the family strange. The biggest factor is that the family is just – kind of strange. They are entirely standoffish half of the time, and the other half of the time, they are breaking down in tears or erupting in anger, or in gales of laughter. Maybe it was just the way it was written, focusing on the most dramatic moments in what was actually a long period of research for this author, but the whole family seemed manic to me.
Then there was one other issue: I read this book because it was featured in the Engage NY curriculum, which the school where I teach has informally adopted as – well, they’re not rules so much as “guidelines.” The curriculum is online, free, and incredibly detailed and extensive. It also annoys me endlessly because it uses almost exclusively excerpts. The students don’t actually read Romeo and Juliet, for instance; they read a few key scenes and speeches, and analyze those bits. The analysis is great, but I’m a literature teacher: which means I want my students to read literature. You know, to the end of the story. One exception to the excerpt rule is – The Immortal Life of Henrietta Lacks. The students read the whole thing in 10th grade as a jumping-off point for a research project. And I saw this (I should note that I may have misunderstood the curriculum map, and this novel is also excerpted; that makes more sense, but I think it said the whole book.) and thought, “Well, if they’re not going to read all of Shakespeare, but they DO read all of Skloot, this must be the best book ever!”
It’s not. It’s pretty good. But it’s no Shakespeare. And in terms of actually teaching this book, there is some cussing and language, and a fairly graphic scene of child molestation, so I wouldn’t recommend it. If it was brilliant, the scenes could be taken out or glossed over; but it’s not brilliant enough to fight over.
All in all, I’d rather read Frankenstein.