Book Discussion: The Immortal Life of Henrietta Lacks ~ SPOILER FREE~

Am engrossed in this so far, despite the sorrow and all the injustices.

Edited to add: Forgot to tag the book!
The Immortal Life of Henrietta Lacks

It's fascinating. I do find some of the dramatic "reinactments" kind of silly, but I guess you need that in this day of "reality tv."

I've got to shake The Game of Thrones off, now that I've finished reading it, and get back into this book. I'm going to try to do that right now, rather than going on line to hunt for the second book in that other series....

oh, never mind, I'll be back later

This will be my next audio download so I can join in w/you guys.

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.

Just got the book today. I'm almost done with Evil Genius and I need to read a Sherlock Holmes for my other book club. I'll try and read a bit of Henrietta in between so I can join in. I'm looking forward to getting into this one.

I've requested a copy from the library. I'm 8th on the wait list and there are 4 copies so it shouldn't be too long a wait. I'm trying not to get involved in any huge books in the meantime so I can dive right in when it arrives.

Sweet cheeses. :o/ Some of these researchers, like Chester Southam, had no scruples. :o(

I listened to something on NPR about this a few months ago. Made me think twice when I saw the papers my dad had to sign just to get released from the hospital!

Yipes. I never even thought of that...

Yeah, there are some really nasty people in this book. I'm having trouble staying with it, it's just too depressing.

I really don't love the way the author inserts herself into the narrative.

starting this one this weekend

When she writes about the science her prose is clean, crisp and spot on, but the personal stuff reads almost like a YA book.

#12 Exactly! I'm having trouble understanding how this book got so much amazing hype.

The content is eye-opening.

True, but it's spotty. Not much about Henrietta herself (which isn't the author's fault). Not enough of the science. It doesn't appear as if she actually interviewed any of the scientists, at least so far. She seems to have relied on 3rd party sources for most of it. We see the Lacks in minute (sometimes way too minute) detail, but the health professionals and the science they do are viewed from a distance.

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.

LG, you present some interesting thoughts and questions. I may have to get back to it, leaving Book 2 of that other series behind for a moment. You have me curious, now.

am about 1/2 way through it and I have mixed feelings that no doubt would have the PC police after me big time.

I am finding this book absolutley fascinating I'm not much one for science but this book has completely grabbed me and I don't want to stop listening to it!

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.

I am impressed Susie. Bookmarque, tell all. The PC police do not hang out here. No they don't. *smirks*

I'm conflicted. I do not want nor condone abuse of power by the medical establishment, however, paranoia and ignorance shouldn't trump advances in research either. I'm not surprised that the law now stands that tissues given up during medical procedures can be used for research since not many people could fully understand the ramifications with informed consent. The possibility of out of control imagination and ignorance drying up tissue availability isn't pretty. I don't think it's a race thing, just a socio-economic thing; poor education. People who chase after money need to pause in their thinking; could they have made use (and money) from their cells without outside help? Not. Therefore they aren't 'entitled' to anything much.

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.

The question seems to boil down to: if you take a little bit of my body, and that is Me after all, then I'm not entitled to some sort of compensation because I didn't invest money in getting this body. Is that what you're saying? Or am I completely not understanding your post?

well, kinda. I'm sure I have samples on file somewhere since I had cancer last year, but I don't feel any kind of ownership about them specifically. Am I entitled to own something that otherwise would have killed me? To an extent, yes, I think so, but it refers to my individual genetic profile and what can be done with that more than it does to research. I think we ALL benefit from research as a society (vaccines and curative treaments most prominently), but I think the insertion of automatic rights to monies derived from research is going to be limiting more than anything. Right now the research companies themselves hold all those cards and it has drastically changed the spirit of pure research. No more altruism, sharing or collaborating; it's a drive for profits and ownership. I can't help but think that is stifling.

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 feel like Debra (listening on audio if this is spelled wrong) didn't want compenstation she just wanted people to know that HeLa was her mother a real living breathing person.

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??

When I participated in a small research project, related to treatments for my Rheumatoid Arthritis, I did receive some "swag" and a small token amount of money. It did make me feel as if my participation was appreciated and I am now probably more willing to at least consider participating in the future, should another opportunity arise. I certainly did not get rich but then again no one else did either, I don't think. The HeLa cells might have been somewhat different.

I still need to finish the book.

They have a medical research facility near where I live where you can do research studies and you do get paid for it.

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.

I don't have any feelings one way or the other if some of my discarded tissue or test-related tissue has gone on for further testing/experimentation. It doesn't affect me unless I become emotional about it (why?) or if some consequences arise because of it (hasn't). If something that came from me is being used to do some good work, yay. If not, doesn't matter. I just can't get all worked up about it. Now if there were negative consequences it would be different. Yeah sure, people can get all het up about it, but I don't think they're thinking rationally, just emotionally. Unless negative results ensue of course.

I guess its not that I care really this book just kind of makes you curious....it goes to things that make you go HMMM

True. Overall I liked it. It wasn't perfect, but it was good.

Makes me kind of wonder if I should have asked what happens to the placentas and such when I had my kids. But overall, I feel that if some medical/health benefit comes from research done on them, I don't mind. It's like being an organ donor, without having to die first. I'll just have to hold my thumbs that they're not being used for ill and that there will be no clones of me or the kids popping up.

eta: I'm still 8th in line for the book :o(

>29 sandragon: Wah wah wah. I'm 62nd! :D

Ooh. Now I don't feel so bad :oD

I'm with sandragon on this, though I'd be pretty angry if I found out someone was making lots of money off any of my bits without bothering to tell me.

how much difference would it make if they did tell you?

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'd like health care and pharma to be nonprofit like, oh, nongovernmental social services. Charge what it costs them to provide the service, with reasonable compensation for professionals who work there. Stop with the multimillions for some doctors who provide plastic surgery for the rich and famous. I am using a Cooperative medical provider which started in Seattle back in the 1940s. It may be one of the largest non-profit medical provider systems in the country. I love it. (I guess that might make me a part-time communist)

I just don't ever want to meet me walking around a corner without having been warned of the possibility! ;)

I've found this book very intriguing. I have mixed feelings on the testing and using of tissues and cells from people. I think we should be informed that that is a possibility, but I would go ahead and say yes even if I wasn't going to get any compensation. Why not? If it helps others.

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.

It's not the helping others I mind. I would be all for it as long as someone along the line isn't making a private fortune. I think it was that case in California that got to me the most. For years this unscrupulous putz was taking blood serum from a patient and selling the the line of cells he was growing for millions, and never said a word!

Yes, Clam, I agree it was the California story which got my hackles up, too. I wish there was a way for Henrietta's family to gain some benefit, though, as they clearly need some support from somewhere. Maybe an author could share the profits from a book about her?

Oh my. I'm to the Afterword. I have to say I really got caught up in the family! In many ways they reminded me of my mom. She grew up in the hills of Kentucky as a coal miner's daughter in the 40s and 50s. Some of the beliefs she still carries make my siblings and I chuckle (and cringe at times).

I do agree with Clam, the California story was horrible and made me angry.

I agree with maggie, catzteach and clamairy (#34, 36, 37). I think if someone came up with a miracle cure, they should be compensated for their work. But if they sold that cure at a prohibitive price just to make a fortune, I'd be upset.

I like the analogy of finding oil on your property. It isn't exactly all yours, you need the experts to use it profitably, and certainly you should gain some benefit, a portion of the profit.

ah, but what about healthcare being non-profit?

OK, let's skip the word profit, and use the words "reasonable compensation". Being nonprofit does not mean that none of the humans involved gain. CEOs of nonprofits frequently make nice salary and benefit packages due to their skills and abilities. As long as no one is greedy, it can be worked out.

Want ebook; have. 6 hours on trains = book read in 1 day.

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

Just got my copy of this book. I'll start it today and hopefully it won't be too long before I transfer over to the spoiler thread.

I'm really dragging through this. Part of it is because I've been busy and the weather has been too nice to sit. LOL I had to renew it from the library. You may finish before me, sandragon! :o)

I'm in 39th place at the library!

*twiddles thumbs*

I still haven't finished it either, clam. It's a combination of too depressing/not enough science that is keeping me away, I think. Rampant capitalist greed (which includes taking advantage of the uninformed or underprivileged) applied to basic human needs just sickens me.

#48 - this is why this was such a good book for GD to choose to discuss. I saw absolutely no capitalist greed, merely greed from the poor wanting the riches without the work.

FWIW reading_fox, I didn't see much of any either. not in terms of HeLa anyway.

#49 So the researchers who sold the HeLa cells for profit (who weren't even the ones who discovered its properties), who made large profits from drugs derived from it weren't greedy, I guess. For me, it's the very idea that everything should be reduced to how it can get us a blessed buck that is disgusting. So I guess I agree with you a bit as well.

I think a lot of people who aren't entrepreneurs misuse the word greed when it comes to someone else starting a successful business. One that employs many people, invents technology or processes that will give rise to more advances, fills a need and maybe, just maybe, does some good. I do not begrudge them.

#51 - just to clear, the researchers / companies that sell the HeLa cells, made small profits on providing a bulk service, and still needed to develop and refine technologies to do so.

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.

Yes, agreed. Yet drug companies do make record profits, despite having to post losses on the failed drugs. And in this country, the insurance companies are also insanely profitable, mostly by denying coverage to millions. What bothers me most about this book is that apparently the answer to all this is to give the rare person who happens to have interesting tissues a cut of the action.

That and that the author is pretty much exploiting the Lacks as much as anyone.

I haven't, and won't read the book, but this is a great discussion and it is wonderful to have your perspective, reading_fox. Not many of us actually work in the industry. Thank you!

I did find some socially redeeming events during the decades of the unfolding of this story. I don't know if I should be specific here or not, for fear of "spoiling" the book for someone who has not yet rec'd it. (looking at you, Morphy)

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 didn't get the exploitation either. I guess you find what you seek as in anything. But really, a college student working without a contract for 10 years...exploitation? Again I don't see it.

Eh, just an FYI, I'm a spoiler-iffic type person. I read the last page of every book first. Even the romances.

Morphy, are you ever disappointed by the ending, and then don't even start the book?

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.

>59 sandragon: Nah, not that I recall. Okay, maybe one made me feel that way a little. Blameless had an ending that pissed me off. But the series is so good, I read it anyway.

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?

Anyone still working on this book, or waiting for it?

not I, but did you see this: http://www.npr.org/2011/05/23/136587856/henrietta-lacks-receives-honorary-degree...

the link takes you to NPR to listen to the story

I hate to be a jerk, but that's so meaningless as to make the whole effort farscical. What happened to her has great import, but she didn't actually do anything. It somehow lessens the real achievements of others who earn real or honorary degrees.

I recognize your point of view, but I disagree that it lessens others' achievements. Honorary Degrees are bestowed upon all sorts of people for all sorts of "contributions". It must provide some small measure of recognition which may please Ms. Lacks's family and descendents. If it does that, I say, well done.

Just read this NY Times Opinion piece by Rebecca Skloot about recent developments.

And here is a follow-up:
http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-la...