Book: The immortal life of Henrietta Lacks
Apr. 9th, 2011 10:00 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
livAuthor: Rebecca Skloot
Details: (c) Rebecca Skloot 2010; Pub 2010 Macmillan; ISBN 978-0-230-75277-1
Verdict: The immortal life of Henrietta Lacks is a heartrending work of journalism.
Reasons for reading it: Although I know quite a bit about the origins of the HeLa cell line, I'm interested to learn more, and I'd heard some very good reports of Skloot's book.
How it came into my hands: Waterstones had it on special offer when I was looking for something else.
Reading The immortal life of Henrietta Lacks was a bit of an odd experience because I already knew most of the facts from general knowledge, actually working in the cell biology field, and the excellent BBC documentary of a few years ago, but Skloot casts them in a completely new emotional light, and fills in lots of background detail about the social context of Lacks and her family. In some ways Skloot is getting money for old rope by rehashing a lot of ground covered in said BBC documentary (which she does acknowledge as an important source). However Skloot's point is less the story of the HeLa cell line, dramatic though that is, and more the historical mistreatment and exploitation of poor African-American patients by the medical community. Again, that story isn't completely unfamiliar to me, but Skloot makes it very vivid (which means frequently distressing).
One of the very striking things is the depiction of just how poor Lacks and her family were and still are at the time of writing. I experienced a slight mental jarring because I associate the kind of thing Skloot describes with rural white people: living in trailers or other inadequate accommodation, share-cropping, cousin incest and child molestation, very young childbearing, no more than a few years of education, absent fathers and male relatives in and out of prison. I think this is partly because the default of most information that comes my way is to talk about white people, unless the scenario is specifically about racism, when the temptation is to present people for whom racism is the only obstacle to getting on in life. I also have a hard time holding in my head just how recent slavery was in the US, and just how much overt discrimination went on in the subsequent century or so before the Civil Rights era. This is foolish of me, because I've read things like The color purple and Their eyes were watching God. I just instinctively regard them as ancient history rather than stuff that happened in living memory!
I suppose the difference is that characters in novels may have miserable lives, but they usually achieve some kind of redemption, or at least their suffering is poignant and meaningful rather than the pointless and random suffering that happens in reality. Lacks is, basically, the sort of person who never features in novels, and only shows up in non-fiction because of the serendipity of her cancer cells just happening to be the first to be grown successfully in culture. Skloot creates a very vivid portrait of her, making her seem like a person and not just an object of pity, which of course makes the reader care more about her than if the narration were more sentimental about how awful and tragic her life was.
Skloot also conveys the more or less dead-end lives of Lacks' surviving descendents and other relatives, again treating them as people rather than horrifying peep shows. Though the section where Skloot helps one of Lacks' daughters, Deborah, find out what happened to her sister Elsie, who was confined to an institution because of her intellectual disability, I found really distressing. In some ways their problems of poverty, ill health and racism are exacerbated by Henrietta's (bizarre) fame, which causes them to be subjected to further exploitation by paparazzi and other unscrupulous people. Perhaps to justify her own actions in further prying into the family's lives after all the unwanted media attention they have experienced, perhaps to give her account something of a positive arc, Skloot talks quite a lot about helping the family to understand better exactly what happened to the cells. There's a very touching scene where she has a cancer researcher show two of Henrietta's children a sample of the HeLa cells, labelled with GFP, live via a video microscope. I'm not sure how well this part of the story worked; certainly it was nice to have something uplifting rather than grindingly depressing, but it feels very nice-white-lady-ish, and perhaps just as exploitative in its own way as publishing personal details about the family without their permission or hassling them for "material", whether journalistic or biological.
Skloot is also righteously angry about the (ongoing) history of medical experiments performed without adequate, or sometimes any, consent from the subjects, and how the modern ethical restrictions on medical research don't go far enough and are unevenly applied, partly as a result of racism. This is an important moral message, and the Henrietta Lacks story is a very vivid way to make this case. I am less convinced by her arguments about financial issues; it feels as if she lets passion get in the way of balanced reporting, but then I don't have a full picture of how the commercial side of research works in the US. The science writing is generally good but short of brilliant; Skloot is pretty good at explaining as much science as you need to know to be able to understand the story, without going into nerdy detail. It's not really the right book to read if you really want to know about how cancer research or cell biology work, though.
She's really really scrupulous about making it clear that many of the problematic research decisions were considered ethically acceptable at the time the research was carried out; her critique is aimed at the scientific community as a whole, and she avoids portraying individual researchers as monsters. Certainly she has made me less resentful about the mountains of paperwork associated with obtaining ethical approval for research on patients and patient tissues; I was always a fan of the ethical restrictions but sometimes the bureaucracy can be pretty discouraging, and tILoHL reminds me why all that faff is necessary. I think it's also reminded me how important it is to maintain my own ethical awareness and not just assume a procedure is ok because it's what everybody in the research community does.
Details: (c) Rebecca Skloot 2010; Pub 2010 Macmillan; ISBN 978-0-230-75277-1
Verdict: The immortal life of Henrietta Lacks is a heartrending work of journalism.
Reasons for reading it: Although I know quite a bit about the origins of the HeLa cell line, I'm interested to learn more, and I'd heard some very good reports of Skloot's book.
How it came into my hands: Waterstones had it on special offer when I was looking for something else.
Reading The immortal life of Henrietta Lacks was a bit of an odd experience because I already knew most of the facts from general knowledge, actually working in the cell biology field, and the excellent BBC documentary of a few years ago, but Skloot casts them in a completely new emotional light, and fills in lots of background detail about the social context of Lacks and her family. In some ways Skloot is getting money for old rope by rehashing a lot of ground covered in said BBC documentary (which she does acknowledge as an important source). However Skloot's point is less the story of the HeLa cell line, dramatic though that is, and more the historical mistreatment and exploitation of poor African-American patients by the medical community. Again, that story isn't completely unfamiliar to me, but Skloot makes it very vivid (which means frequently distressing).
One of the very striking things is the depiction of just how poor Lacks and her family were and still are at the time of writing. I experienced a slight mental jarring because I associate the kind of thing Skloot describes with rural white people: living in trailers or other inadequate accommodation, share-cropping, cousin incest and child molestation, very young childbearing, no more than a few years of education, absent fathers and male relatives in and out of prison. I think this is partly because the default of most information that comes my way is to talk about white people, unless the scenario is specifically about racism, when the temptation is to present people for whom racism is the only obstacle to getting on in life. I also have a hard time holding in my head just how recent slavery was in the US, and just how much overt discrimination went on in the subsequent century or so before the Civil Rights era. This is foolish of me, because I've read things like The color purple and Their eyes were watching God. I just instinctively regard them as ancient history rather than stuff that happened in living memory!
I suppose the difference is that characters in novels may have miserable lives, but they usually achieve some kind of redemption, or at least their suffering is poignant and meaningful rather than the pointless and random suffering that happens in reality. Lacks is, basically, the sort of person who never features in novels, and only shows up in non-fiction because of the serendipity of her cancer cells just happening to be the first to be grown successfully in culture. Skloot creates a very vivid portrait of her, making her seem like a person and not just an object of pity, which of course makes the reader care more about her than if the narration were more sentimental about how awful and tragic her life was.
Skloot also conveys the more or less dead-end lives of Lacks' surviving descendents and other relatives, again treating them as people rather than horrifying peep shows. Though the section where Skloot helps one of Lacks' daughters, Deborah, find out what happened to her sister Elsie, who was confined to an institution because of her intellectual disability, I found really distressing. In some ways their problems of poverty, ill health and racism are exacerbated by Henrietta's (bizarre) fame, which causes them to be subjected to further exploitation by paparazzi and other unscrupulous people. Perhaps to justify her own actions in further prying into the family's lives after all the unwanted media attention they have experienced, perhaps to give her account something of a positive arc, Skloot talks quite a lot about helping the family to understand better exactly what happened to the cells. There's a very touching scene where she has a cancer researcher show two of Henrietta's children a sample of the HeLa cells, labelled with GFP, live via a video microscope. I'm not sure how well this part of the story worked; certainly it was nice to have something uplifting rather than grindingly depressing, but it feels very nice-white-lady-ish, and perhaps just as exploitative in its own way as publishing personal details about the family without their permission or hassling them for "material", whether journalistic or biological.
Skloot is also righteously angry about the (ongoing) history of medical experiments performed without adequate, or sometimes any, consent from the subjects, and how the modern ethical restrictions on medical research don't go far enough and are unevenly applied, partly as a result of racism. This is an important moral message, and the Henrietta Lacks story is a very vivid way to make this case. I am less convinced by her arguments about financial issues; it feels as if she lets passion get in the way of balanced reporting, but then I don't have a full picture of how the commercial side of research works in the US. The science writing is generally good but short of brilliant; Skloot is pretty good at explaining as much science as you need to know to be able to understand the story, without going into nerdy detail. It's not really the right book to read if you really want to know about how cancer research or cell biology work, though.
She's really really scrupulous about making it clear that many of the problematic research decisions were considered ethically acceptable at the time the research was carried out; her critique is aimed at the scientific community as a whole, and she avoids portraying individual researchers as monsters. Certainly she has made me less resentful about the mountains of paperwork associated with obtaining ethical approval for research on patients and patient tissues; I was always a fan of the ethical restrictions but sometimes the bureaucracy can be pretty discouraging, and tILoHL reminds me why all that faff is necessary. I think it's also reminded me how important it is to maintain my own ethical awareness and not just assume a procedure is ok because it's what everybody in the research community does.
(no subject)
Date: 2011-04-14 01:49 am (UTC)It doesn't take very long as train or bus passenger to see that the extremes of poverty affect every ethnic group. Some parts of the U.S. do an outstanding job of maintaining parallel, separate, slums organized by "race." The interpenetration of racism, poverty, class, land ownership mechanisms and municipal control are so complex that even the folks who analyze the Census Data can't make it comprehensible
(no subject)
Date: 2011-04-14 08:51 am (UTC)I haven't taken very many buses in the US. Only really in Manhattan, and the Fung Wah bus from New York to Boston once. But I could have used my common sense to figure out that African-Americans were at least as likely to be living in extreme poverty as white people! So I wasn't exactly surprised, it was a matter of adjusting my mental associations.
(no subject)
Date: 2011-04-16 12:36 am (UTC)(no subject)
Date: 2011-04-14 09:14 am (UTC)On the author's website, she says this is a pretty common reaction.