The Immortal Life of Henrietta Lacks (spoilers)

[sporklemotion]

I just finished this book-- has anyone else read it?
I found the question of cell ownership so fascinating and I felt really bad for the family, though I also felt like at a certain point there was nothing anyone could do to remedy the situation. They were convinced that they had been wronged by Hopkins (though I'm not sure I agree) and were so distrusting. It really helped me understand the importance of informed consent, even when there isn't really a risk to the donor.
I wonder why Deborah never took Rebecca up on the offer to read/hear the book, and I wonder what she would have thought of it if she had.

[mrshandy]

Great book.

It was sad what happened to the family, but it was a different time and there is really not much Hopkins can do about it. I don't remember if they ever apologized, but maybe a formal apology would be best.

[Deleted]

I enjoyed the book.
It is sad that way back when it all began there wasnt some sort of agreement with the family for some sort of payment ( royaltys?)

[mollymoe]

I was a little disappointed with this book. It got such great reviews that I kept questioning why I didn't like it.

I read this awhile ago so I don't remember all the details but I think it is unfortunate that the family didn't understand what was happening and some of the scientists could have made more of an effort. I remember one researcher gave Deborah a very high level science book and sent her on her way. But I guess I just feel that science using her cells for research isn't that big of a deal.

[mollymoe]

May 18, 2012 7:48:52 GMT -5 @susanh said:

I enjoyed the book.
It is sad that way back when it all began there wasnt some sort of agreement with the family for some sort of payment ( royaltys?)

I think the book said something about this. It has been awhile so I could be wrong but I believe if you go to the doctor and have tissue or cells removed, you no longer have any claim to those cells. Those cells and tissue can and have been used for research so if John Hopkins paid money to the family, what about the other people who donated tissue. Plus, going forward, researchers would have to pay people for their tissue and they don't want to do that.

[charminglife]

I really enjoyed this book.

What I think is important to remember was the difference in the way patients and doctors interacted when Henrietta was at Hopkins, as well as the cultural biases of the time. She was a low income African American woman - I'm sure her doctors didn't think she was capable of understanding and consenting so they didn't bother.

[imoan]

I was absolutely fascinated by this book. I remember when I first heard about it, I was chomping the bit to download it and start reading it.

Sad... but fascinating.

[5kcandlesinthewind]

It was a fascinating story, but the author's tone really bothered me. She just seemed to go out of her way to point out how she wasn't using the family like all the other people who tried to get their story, when she was totally using them. I think it came down to them finally being ready to learn the truth more than anything. And yes, she started a foundation with a portion of the proceeds, but I couldn't help but wonder if she'd dislocated her shoulder with all the patting herself on the back she did while doing so.

[doxies]

May 18, 2012 8:27:09 GMT -5 5kcandlesinthewind said:

It was a fascinating story, but the author's tone really bothered me. She just seemed to go out of her way to point out how she wasn't using the family like all the other people who tried to get their story, when she was totally using them. I think it came down to them finally being ready to learn the truth more than anything. And yes, she started a foundation with a portion of the proceeds, but I couldn't help but wonder if she'd dislocated her shoulder with all the patting herself on the back she did while doing so.

I agree with this. I think the main reason the story was so interesting was because the family was such a mess. So of course they had to exploit that. Really the contrast between the scientists and the family only worked because the family was like that.

[bluelikejazz]

I loved this book. I thought it was so fascinating.

[lemondrop]

I really need to read this book. It sounds so interesting.

[briedrew]

Reading this book made me grateful for the way the doctor/patient relationship has evolved over time. I think there are a lot of people in older generations who still take what the doctor says and go without really digging to make sure they understand. I'm glad that more physicians are willing to take the time to explain things not only to patients but to family members.

Much as I think the family's situation was sad, I don't think there should be royalties for the use of cells in research. Like one of the earlier posts said, once those cells have been taken the patient doesn't have rights to them. I think it becomes a very slippery slope and then cells become a commodity. I think that could get into some scary situations since some people will do anything to make money.

[imoan]

May 18, 2012 9:09:57 GMT -5 lemondrop said:

I really need to read this book. It sounds so interesting.

Doooooiiiiit! You wont be disappointed. It's not like the writing is changing the world, but the topic is FASCINATING. I have recommended this book to sooooooooooo many people!

[mdgirl]

I found the book extremely interesting because I work in clinical research and almost every aspect of the story relates to my job. And paying participants for any aspect of research is a hot topic. In the US it can't be a high enough amount to convince someone to do it, and Australian research subjects can't be paid anything.

I also didn't like the author's tone. It felt very white knight-ish to me and dipped into condescension at times.

[rootbeerfloat]

Great book. I wasn't bothered so much by the author's tone as much as I just didn't need to read so much of her story. I suppose it explained why the family ultimated trusted her, but the historical and science stuff was more interesting.

[lemondrop]

May 18, 2012 9:20:31 GMT -5 imoan said:

May 18, 2012 9:09:57 GMT -5 lemondrop said:

I really need to read this book. It sounds so interesting.

Doooooiiiiit! You wont be disappointed. It's not like the writing is changing the world, but the topic is FASCINATING. I have recommended this book to sooooooooooo many people!

I just picked it up on CD at the library. I'm going to give that a try (because it was there) even though I haven't had the best luck with NF audiobooks while driving.

[sporklemotion]

May 18, 2012 8:00:36 GMT -5 mollymoe said:

May 18, 2012 7:48:52 GMT -5 @susanh said:

I enjoyed the book.
It is sad that way back when it all began there wasnt some sort of agreement with the family for some sort of payment ( royaltys?)

I think the book said something about this. It has been awhile so I could be wrong but I believe if you go to the doctor and have tissue or cells removed, you no longer have any claim to those cells. Those cells and tissue can and have been used for research so if John Hopkins paid money to the family, what about the other people who donated tissue. Plus, going forward, researchers would have to pay people for their tissue and they don't want to do that.

I also got the sense that it's complicated, too-- she said a few times that the vast majority of tissues aren't really worth much on their own, but at what point do you determine this? Also, the person who took and initially used the cells didn't get rich off them-- the royalties came in later. So is this something that can be tracked and monitored? I'm not a scientist, so I don't really know, but it just seems really tough to do.

I agree with others about her tone both towards the family and towards those who exploited them. I think she wanted to do the family justice, but at times it came across a little self-indulgent to me.

[artichokeheart]

I found this book to be a situation where the topic was much more interesting than the delivery of the topic. The science part was really great - I loved when all the other cell lines that were being created were found to be contaminated with HeLa. However, while I felt bad for the Lacks family, I never made a strong connection to them. The author was really pushing their plight at us and came across as awfully preachy. I still don't know how I feel about the donor tissue issue in general, but what Hopkins did at the time was not illegal, so I had a hard time getting as up-in-arms about it as the author seemed to want me to get.

[mx27]

fascinating story, boring book.

[dutchgirl678]

I haven't quite finished this yet, but I greatly enjoy reading this book. It's just so enlightening! It's sad what happened but it really tells you a lot about how people thought back then and how much has been accomplished in the last few decades wrt informed consent etc.