The Immortal Life of Henrietta Lacksby Rebecca Skloot
My rating: 3 of 5 stars
The Immortal Life of Henrietta Lacks / 1400052173
I was really excited to read this for a book club; I'd heard that the book was really wonderfully written and informative. Now having read it, I'm really struggling with my review: how do you rate a book that has a great first half but which I only finished because I didn't want to show up to book club not having read the whole thing?
The first half of this book tells the story of Henrietta Lacks, and how she came to be so incredibly important to the field of modern medicine. The chapters that cover the technology used to work with her cancer cells and which give a sort of 'history of modern medicine' overview are extremely interesting and informative, and well worth the investment of this book, I think.
There's a lot of valuable discussion of the ethics of medical research, and how our understanding has grown and changed over the years. For instance, Henrietta's cells were used without compensation because the mentality at the time was that charity care in a free hospital meant that the patient's cells, once 'donated' for their own diagnosis, could then be used without permission and compensation for research. Whether or not this is fair to the person from whom the cells originated is a complex question that we've answered differently as a society over the years, and I appreciate the balanced look provided in the "science sections" of the book.
Unfortunately, in the second half, this book tails into a sort of autobiography of the author as she follows Henrietta's surviving family and children around the country. And it's this half that is something of a slog to wade through. Everything discussed here is interesting, but it becomes repetitive quickly as the author covers and recovers the same ground (Henrietta's cells were taken without her permission; her surviving children have not been compensated adequately), and several members of my book club thought that the author toots her own horn enough to be seriously distracting.
Worst of all, there's a feeling in several places that the author is carefully editing and editorializing the 'facts' in order to work peacefully with the family -- in the chapter where the children are abused by their new step-mother, for instance, you'd be forgiven for assuming that their father dropped off the face of the earth, because I'm not sure he even appears in that chapter once the new step-mom moves in. And, again, when Henrietta's daughter complains that she wants the scientists to tell her what her mother was like, and the things she enjoyed, it's frustrating as a reader to not be able to ask why her father (and indeed the community at large) isn't able to tell her these things -- after all, Henrietta and her husband grew up together in the same house!
The second half of the book is framed in a sort of moral crusade: the family should be compensated for their mother's cells because they can't even afford proper medical care! I sort of agree with everything in that sentence EXCEPT the "because". I think the family should have universal health care regardless of whether or not they hit the genetic lottery in terms of their mother, and I also think they deserve some kind of compensation for all they've been through. I think by linking those two issues in a cause-and-effect sort of way, however, really obscures all the other poor people in Henrietta's community who are also being denied health care on a daily basis.
I guess, in the end, I liked what I learned in this book, but the way it was presented made me feel like the author was pushing an agenda and a 'version' of history. That makes me uncomfortable in a supposedly non-fiction biography / science text, and so I'm not sure how much I personally recommend this past the first half.
~ Ana Mardoll
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7 comments:
I felt much the same way when I read it. I also came away very disturbed at how non-civilized our country can be. I mean, I already knew that, but yikes.
This was the third community I've read about this year (the others being closed FLDS communities and Amish communities) that are characterized so thoroughly by cousin marriage and rampant rape. I mean, I realize that we have high rape rates in this country, but at least in my childhood, I didn't have to fight off rape from a variety of relatives on a near-daily basis.
I find that really utterly depressing, and far worse than anything else in the book, really. :(
It was pretty depressing. What's also pretty depressing how much that closed community in rural Virginia two generations ago is still affecting its descendents living in big-city Baltimore right now.
It's been a while since I read it, so I don't remember the details, but it seems to me that Henrietta's daughter, Deborah, was the true center of that second half, and that she more than held her own against the author.
Where was her father during her childhood? Again, I don't remember the details, but wasn't it one of those families where the children weren't told much of anything? Adults came and went, and the children learned not to ask questions? For that matter, family members of any age didn't talk much to each other; some families are like that.. Was Henrietta's husband alive, and competent, when Skloot was doing her research? I don't remember. Anyway, the point was, I thought, not so much that Deborah couldn't get information about her mother from family members, but that the (white) doctors and scientists who knew everything there was to know about the HeLa cells didn't know or care anything about Henrietta Lacks as a person, even as careers and reputations were founded.
Should they have cared? Ethical standards change, a cancer cell is not in fact a person, Henrietta seems to have received pretty much the standard of care of the time, medically speaking. If she and her family weren't seen as important people by her doctors and the JH scientists, well, again, sometimes its seems like not much has changed here in Charm City. And I think that's the point.
Everyone deserves medical care. But Henrietta and her relatives and her descendants who migrated from rural Virginia to Baltimore looking for work deserved a lot more of a lot of things than any of them got.
[TW: Violence]
It's been a while since I read it, so I don't remember the details, but it seems to me that Henrietta's daughter, Deborah, was the true center of that second half, and that she more than held her own against the author.
Yeah, I finally decided not to mention it in the review directly, but I did *not* like Deborah, and yes, she dominates the second half. She repeatedly strikes the author and at one point slams her body and head into a wall hard enough that the author looses her breath. That's a SERIOUS trigger for me, so I pretty much hated all the parts with Deborah.
I understood that she was very much a product of her childhood and that she'd been trained from an early age to be violent in order to protect herself from the constant threat of rape, but it was still very triggery for me to have her attacking the author as much as she did.
That and all the family members causally mentioning that one of the brothers would kill the author if she pronounced his name wrong. And that's presented as very serious... it's mentioned off-handedly in the epilogue that he was thrown out of an assisted living community for throwing a woman through a plate glass window or something. That sort of thing... very triggery.
Was Henrietta's husband alive, and competent, when Skloot was doing her research?
Oh, and yes, he's in the book -- Skloot interviews him at one point. There's also a quick line near the end that mentions that one of the brothers does blame him for his abuse during childhood. It was kind of then when I realized that she'd heavily edited that whole childhood chapter to keep on good terms with the father.
I understand that she's trying not to victimize the family further, but... I don't know how I feel about that in a book styling itself as non-fiction. Maybe all biographies do that and I've just been naive all this time.
Yeah, I agree -- cooperative biographies must be real tricky to write.
I don't know, that's always kind of an issue with me: how much right does an author have over a living person's story? What to leave in, what to leave out, when is "leaving-out" lying by omission and when is it a due regard for a private person's privacy?
The Lackses themselves were kind of conflicted about that, weren't they? On the one hand, they wanted Henrietta's story told, with whatever financial benefits or intangible rewards might come of that; on the other hand, they were tired of white people using their lives for their own purposes and not ready to bare their souls on demand.
I'm lucky enough to not be triggered by descriptions of violence, so I didn't react as strongly to those sections, I guess. I didn't exactly like Deborah, but I couldn't help but sympathize with her: she worked so hard for so little.
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