Book Discussion: The Immortal Life of Henrietta Lacks CAUTION ~ Contains SPOILERS ~

I won't be back to this one for a few days at least.

The Immortal Life of Henrietta Lacks

~~~~Proceed with Caution~~~~

*bump*

Just for information, the without spoilers thread is pretty interesting and worth reading even if you have finished reading the book.

I finished the book this morning and am very satisfied with it. There is an extensive Readers' Guide at the end and I'll review it to see if there are any questions I think are worthy of our consideration. Is there anyone else who has finished reading this book? Hello, out there? Anyone?

I finished and reviewed it I found it very fascinating and also found myself truly caring about Deborah.Which almost brought me to tears in the last chapter hadn't realized till then how invested I'd gotten in her.

I definitely was brought to tears. She is a very endearing character. I'd love to have met her. I am also very admiring of the author. Such a lot of work she did. I am impressed with that much academic research as well as all the hours she spent with family members. Awesome.

While there were no tears for me, I was saddened at her (relatively) sudden demise. I wish she could have seen what Rebecca produced after her brave contributions.

I agree I am far from being a science person it was my most hated class in high school so I was a bit afraid of too much science and technical jargon but the author wrote it so simply that even I could understand it. It is a controversial subject yet she was so clear and concise and the parts about the family really made the story.

It brought tears to my eyes too. I hadn't realized how much I was enjoying her either. I'm sad that she didn't get to see the final product.

I'm still reading the afterword but the whole book has made me wonder how I'd feel if I found out some of my cells were getting used. I'd be ok with them using my cells, I would just want to know. I'd also like to know how they've helped.

OK, I'll confess. If some pharma company was making millions selling the offspring of some of my cells, and I was getting no money, no compensation of any sort, and I was just sitting it out, in poverty - I would be royally irritated, pissed, and angry. I'd probably not try to sue tho, too hard, too expensive, too much effort.

I agree maggie ,and you do keep thinking about it long after your done reading it. I looked these up and plan to watch the doc this weekend.

Here's the BBC documentary link

http://www.bbc.co.uk/blogs/adamcurtis/2010/06/the_undead_henrietta_lacks_and.htm...

and here's another site you can watch it

http://topdocumentaryfilms.com/the-way-of-all-flesh/

Finished it, in a day. Enjoyable, well written - but contains hardly any science. I was impressed with the effor the author took to trace back the details.

#10 - If it was that easy, then in that position maybe I would too. But it isn't. The cells in themselves are worthless, it's what you do to them, and the techniques required to keep them "alive" that count - and that can earn the money. And those parts aren't something any patient can contribute to, or deserve compensation for.

I found the history and details of life in 50s US the most interesting. Closely followed by the revelations regarding Hela contamination of other cell lines which I hadn't heard about.

ETA - full review

I found it tragic irony and quite infuriating that Deborah and her brother (don't remember his name now) both suffered so much from not being able to afford medications for chronic health problems and yet their mother's cells were so crucial for health research. I have high blood pressure and I've had times when I couldn't afford my meds either. But I've never gotten that sick. I had no idea what I was risking, just skipping my meds like that. It was terrifying, reading about her condition.

I am responding to a discussion in the spoiler free thread about whether any one escapes being some what of a villain in this story. (Not looking at the family) I thought it was interesting that the first developers of mass production of the cells was one of the strong, traditionally black, colleges in the south and that the first work force to benefit was largely black people. Also, I believe it is this same college which has sponsored a tribute to Hennrietta and her contributions.

Also, I believe the author went to great lengths to clarify that Johns Hopkins has never "profited" from the cell line. Certainly, the hospital could have done more than that but at minimum it was not that institution which made the profits.

The author also set up a foundation to provide educational support to the extended Lacks family and I do not believe she was as exploitative as were the other researchers and authors who interacted with the family.

I think, just like so many things, there really are no clear villains or heroes in this story. The lesson I take away is that more than ever we need health care reform in this country and no one, no matter how poor, should be without access to basic health care.

maggie, I agree. It's the system that's broken, not the individual players (or not most of them). That was my point over on the other thread, although apparently I made it badly.

ah, well, LG, I don't think we need to worry. We know you well enough that no matter how much you might think you are stumbling around trying to express something, we know you are cool!

Finished last night. I can't say I enjoyed it, but I'm glad I read it. The best written portion of the book was the afterword, IMHO. I have mixed feelings about all of it, and I agree with littlegeek. The system, in which patents on cells & genes are awarded to corporations who then restrict anyone else from working on cures or new treatments with them, well it plainly sucks. I understand money must be made, but I hate that it works this way.

I'm not sure I'd be in any rush to read another book by Miss Skloot, either. I think she was attempting to tell the personal tale of the cells and reveal the science behind them as well, but tried to do too much.

Ooh, I'm at number 8 at the library. Shouldn't be long now!

I'm sure you'll whip right through it when you do get it, Morphy. I just kept finding excuses to avoid it. :oD

Well, this discussion fell flat fast. :o/

I get the book tomorrow!

#20 -we're waiting for you to breathe some new life into it! It seems we mostly agree with each other though, so that's always likely to make for shorter conversations.

#21 - YAY!!!!

#22 - Me? LOL Well, hopefully we can reanimate the threads once Morphy get's into it.

Here's a piece of news: http://www.npr.org/2011/05/23/136587856/henrietta-lacks-receives-honorary-degree...

#23 - "re-animate". *snerk*

I picked up a copy at the DC meet up for 75ers. I think I'll start it next. Be back with comments soon...

I finished this up a few days ago and have been mulling it over. More and more, I think the Lacks do deserve some kind of compensation for use of Henrietta's and their own cells. There are examples of numerous arrangements where one party provides the work that goes into research and and development, and another party provides a necessary resource, the resource being money or mineral rights or what have you. But without that needed resource no work could be done in the first place. And the party providing the resource is compensated for in some way, whether upfront or down the road as a portion of the profits. I don't see how this is any different for the Lacks, except that they didn't know they were providing the resource in the beginning. What saddens me is that they can't afford the health care that Hela cells helped to advance. Surely the pharmaceutical and biotech companies that are profiting from Hela cells can afford to help with that? I don't think that is unreasonable to ask for.

I thought there could have been more science in the book, I had several questions left unanswered (like how you can take the results from tests done on abnormal cancer cells and apply them to normal cells or cells with different diseases) but some of these were answered on Skloot's website's FAQs page. Overall, I liked the book and learning the story of the people behind Hela. I think Skloot's did a good thing putting faces to an object (Hela) that tends to be taken for granted.

It does scare me how many people believe the research is more important than the rights and thoughts and welfare of the people they claim to want to help. Like the extreme case of the doctor who, as recently as the 90s!!, was injecting patients and volunteers with cancerous cells without telling them, or if he did tell them, without fully explaining the risks. I do think the research is iimportant but I don't that means we need to run roughshod over others to get results.