Book Discussion: The Immortal Life of Henrietta Lacks ~ SPOILER FREE~
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Edited to add: Forgot to tag the book!
The Immortal Life of Henrietta Lacks
oh, never mind, I'll be back later
Now, didn't I read a fictionalized version of the HeLa cells in a Michael Crichton novel? it was Next I think...about a guy who wanted money and was suing for unauthorized use of his cells. I don't think Crichton mentioned the real situation at all, but it rings a bell.
I really don't love the way the author inserts herself into the narrative.
At this point, it seems to me yet another white person has exploited the Lacks. Yes, I know she set up a foundation, but if you look at what the endowments have actually amounted to, it ain't much.
Still, I haven't finished it, so I'm trying to soldier on and have my mind changed.
I have gone so far as to bookmark the page where I can watch the BBC documentary Modern Times: the Way of All Flesh and done a little hunting for even more of this story for when I am done with this book.
That wasn't very coherent, but it's been background noise while I finish up the book.
I have 40 years of Rolling Stone on DVD-ROM so am going to find the article there, too, just to satisfy my curiosity.
And yes, having your body doesn't mean you should automatically get something for merely having it and not doing anything yourself to produce something commercially viable. so what you have cancer or asthma, or whatever. you know what I mean? It's without effort or understanding so I don't think it should be automatic. Do I think all people should automatically get nothing either? no, but it's the ENTITLEMENT that bugs me.
And once something ceases to be part of you, is it still you? are your toenails still you? your fallen hair? an amputated limb? a cancerous organ? It's medical waste and if you get treatment are you really going to want those materials back? I guess you could, but it seems like allowing for all kinds of personal permutations would be needlessly complex and drive already red-tape laden healthcare into further chaos. And what about that treatment? Should you pay the people whose tissues went into creating it? More than the doctors and scientists involved in making it work in the first place? Isn't it a little bit of a pay it forward deal? I don't know. I don't think I'm making much sense anymore.
it's not a simple solution, granted, and I'm not trying to make it so, but as I said, I'm conflicted.
I also have mixed feeling the research is so important yet part of me feels this family should have gotten some kind of compesation but if Henrietta had been from a prominent family and didn't have the money & social problems would I feel the same way??
I still need to finish the book.
I am just about finished and since this is a spoiler free thread I will just say the last chapter before the afterword made me cry I didn't realize how much I had come to care about the people in this book.
I do think I will be watching more closely what I sign at the doctors office for any procedures I have done, and it makes me wonder about the hysterectomy I had awhile back and they found that I had some pre-cancerous conditions did it get sent away to be further tested?
This is definetly a murky area, I guess it isn't so much to get paid compensation for it, its more just to be informed. The afterword is very interesting and does leave you wondering if anything of you is out there being tested and studied.
eta: I'm still 8th in line for the book :o(
yeah, I'm playing devil's advocate, but seriously, how does it affect you if they are? Also, how do you feel about healthcare profits, including the pharmaceutical companies?
I'm with Maggie, I'd like to see health care and pharma to be nonprofit. I think it's horrible how much all that stuff costs. I see my students suffering every day because their parents can't afford to take them to a doctor. Not cool.
I do agree with Clam, the California story was horrible and made me angry.
I enjoyed it - as a biography of a poor american family, and as some insghts into relatively recent american history. It gives a different outlook to the scenes in say to kill a mockingbird which is presumably a little bit earlier. I saw almost no connection to any science whatsoever. Especially current HeLa work.
I've personally not grown any cell lines, but my Otherhalf has grown some Hela, and I interact daily with people who work with it.
Cells are cells, they aren't really alive in any meaningful sense. The beginning half when a lot of the commentary was on Henrietta still 'being out there' in some way connected to her cells, annoyed me. A lot. I put the book down several times. I know that the Lacks were never informed differently or educated to understand the differences, but I don't think the distinction was pressed home fully enough - I was much more at ease once Deborah did get this point.
And for the record, no, Neither Henrietta nor any of her descendants or relations deserve a cent from any profit that comes from someone elses extremely considerable hard work to go from a bit of blood, to a profitably commodity. Recognition, sure, and I was surprised to learn that they have never recieved anything formal.
I'll transfer to the spoiler thread now
Very different people then do research (over decades), and invest millions of $ in order to make drugs which over the course of 10 or 20 years might in 1% of cases or less make vast profits. Most of the time (99%+) the investment of millions of $ makes no money at all, and is worthless, the drug fails to pass tests. This is why drugs are expensive (but yes I agree sometimes capitalist greed does make them very expensive).
HeLa is only a tiny tiny step along that process.
That and that the author is pretty much exploiting the Lacks as much as anyone.
I'll go over to the spoilers thread and be more specific for those of you who have finished it, or who plan to not read it.
BTW, my chosen bias in these discussions is usually decidedly anti-capitalistic and frequently disgusted by the behavior of large corporations.
I actually read the Afterward for this book first, because I was wondering what the current situation is regarding tissue samples. Now I need to find out what the laws are in Canada, if there are any.
ETA: And twice reading the end did me little good. Agatha Christie has complicated endings! I had to keep checking back. Who? Did what? To who?
the link takes you to NPR to listen to the story