History, Medicine, and Science: Nonfiction and Fiction discussion

I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?

I've already read the book but would be happy to join in on the discussions.

Thanks great, Sparkle.
I'm still on the waiting list at my library, so I haven't had a chance to read it yet.

Would you mind getting us started?
What did you think of the book?

It was very informative when it came to medical research history. I learned a whole lot about history of what I do everyday. Working with Hela cells on a daily basis it was very enlightening.

It really is true that everyday science moves a bit further due to Hela cells.

I did feel that scientific community as a whole was demonized a bit too much in this book. True there are people making money on these cells but those of us who use it as a tool for basic research don't do it for money. Most of the people who actually do the experiments live borderline poverty level. Graduate students who do bulk of these research live on ramen noodles and beans for a reason.

I think I enjoyed this book much more than I would have due to the fact that I am at Johns Hopkins using these cells everyday to do the very research the book talks about.

I have about 100 pages to go.

Got the book and ready to go.

I am enjoying the book quite a bit. I new about some of the experimentation before but am shocked not the less.

I finished the book a couple of months ago with a face to face book group. I really enjoyed it.
After reading Stiff last month, I was struck by the question faced there about whether the donor's families should be told or wanted to be told what their family member's body was used for. Henrietta and her family were never given the choice. I have noticed occasionally when I sign paperwork for a medical procedure that the medical group reserves the right to decide how my tissue will be used if there is any left after testing. Has anybody followed up on that? Will you do so after reading this?

I have noticed that too! Now I am wondering!!! It is too late now but I think I will ask the next time I need to sign those papers.

I own the book but I will be joining this read later. I was able to secureThe House of Wisdom: How Arabic Science Saved Ancient Knowledge and Gave Us the Renaissancefrom the library. It will need to be returned.

I have read it. Amazing subject.

Since I was too impatient to wait for a library copy, I bought it at Borders today for 20% off. (I feel bad that Borders is going out of business.)


I haven’t started it yet, but I read the back cover description and I couldn’t help but wonder:

Would the scientists/doctors have done what they did with HeLa’s cells if she had been a (rich) white woman?


I’m not even sure if this is a relevant question, but it was the first thing that came to my mind….

Hi Yvonne,
I very sure that they would not have. There is some discussion in the book about other experiments that you will see later on.

Yvonne,
I think it is very relevant question.
First, could I ask YOU a question back? What do you mean would they have done what they did with HeLa cells......?

I am not sure if the history of what Dr. Gey had been trying to do was glossed over in the book, but Dr. Gey was trying to establish an immortal cell line that scientists could work with to do basic research. His lab had been trying to propagate cell lines for so long the techs were just going through the motions at the point they received Henrietta's excised tumor. It just happened that her cells were in the right place at the right time. Dr. Gey had learned enough to work out the right cell media and conditions to grow tumor cells in culture when HeLa cells came into his lab. The reason why HeLa cells grew so well in culture is what actually killed Henrietta. So it wasn't so much that they targeted the poor indigent population but her cancer was the type that grew in culture of Dr. Gey at that time in history. If you note that at the time Henrietta lived, Johns Hopkins was the only hospital that treated poor "colored" population in the area, Mr. Hopkins set up the hospital so the poor would have a place to go to be treated.

We have so many cell lines we work with at present that came from very diverse population and no one seems to mind about how THOSE patients or their cells are treated.
We have another cell line, Jurkat cells, that are work horses for immunologists. Those cells came from a 14 year old leukemia patient. Jurkat cells are treated exactly the same as HeLa cells and we have also learned much from those cells, yet we don't hear the outcry we are hearing about HeLa cells since the publication of this book. And there are countless number of cell lines we've cultivated from patients since HeLa, and we continue to do so.

I think it's a travesty that the author has married the social injustice at the time of Henrietta's life and scientific research that came out of her disease to sensationalize one of the greatest scientific moment in medical history in such a distorted way.

I thought that the book was very balanced. Dr. Gey and the techs were not in it to make money but later on, some companies did.

Then to ask would the scientists/doctors have done the same if Henrietta was a rich white woman? If her tumor was excised at Hopkins exactly as Henrietta's tumor was, the answer is yes.
The reason why that would have never happened is the fact that a rich white woman wouldn't have been treated at Johns Hopkins in the exact manner Henrietta was at that time in history.

So Yvonnes question, would scientists/doctors treat white rich womans' tissues the way they did Henriettas'? THAT answer would be a no, not because she was white and rich but because her tissue would have never gotten to Dr Gey, and would have been discarded.

The problem with the whole question isn't did some companies make money off of HeLa cells, but did scientists/doctors treat some population wrongly.
Johns Hopkins and scientific community was being attacked due to Dr. Gey establishing the HeLa cell line and yet Hopkins never commercialized the HeLa cell line.

So is the actual question, "did some capitalistic company make money off of pain and suffering of the poor"?

It was a part of the time to not tell poor and black that they were taking the tissue. I agree with that.

That has been corrected legally. Thank goodness.

Sparkle wrote: "Then to ask would the scientists/doctors have done the same if Henrietta was a rich white woman? If her tumor was excised at Hopkins exactly as Henrietta's tumor was, the answer is yes.
The reason..."

Sparkle wrote: "Then to ask would the scientists/doctors have done the same if Henrietta was a rich white woman? If her tumor was excised at Hopkins exactly as Henrietta's tumor was, the answer is yes.
The reason..."

Sparkle wrote: "Then to ask would the scientists/doctors have done the same if Henrietta was a rich white woman? If her tumor was excised at Hopkins exactly as Henrietta's tumor was, the answer is yes.
The reason..."

Sparkle wrote: "Then to ask would the scientists/doctors have done the same if Henrietta was a rich white woman? If her tumor was excised at Hopkins exactly as Henrietta's tumor was, the answer is yes.
The reason..."

I think the answer to the question Yvonne would be it would make no difference, no one Causian or African were told at the time that their tissue was being used. That really hasn't changed to this day. Tissue consent is still being debated and it is still being harvested without knowledge (take a look at the dust up over what foreskins are used for)

let's see if I can embed my review of the book here without making a mess.

http://www.goodreads.com/book/show/81...

i edited it to just give the link and not the whole review. sorry to stuff up everyone's inbox with that. sigh.

Thanks for clearing that up, guys.

Like I said, I haven't started reading it just yet, but there seems to be a certain racial slate given to the story.

As I read the book and start to understand more about what actually happened, I may have to try re-wording my question, or retract it all together.

Yvonne,

I don't think you had it wrong when you asked that question. I had the same feeling before I picked the book up, and had some reservations about even reading it altogether. But having said that I did learn a whole lot reading this book and appreciated the book very much for the medical history and learning about the story of Lacks family. The author did a great job of researching the background and presenting them.

I just didn't see a point in merging the social injustice of treatment of poor African Americans with how HeLa cells came to be. I honestly didn't think scientific establishment happened upon HeLa cells by exploiting certain segment of population. Granted the other medical experiments that were explained in this book DID exploit poor African American population but it's a far stretch to say that all that led up to how Dr Gey came to use Henriettas' cells the way he did or even the scientific community for that matter.

It's more relevant to say that medical ethics issues are still being formed as we go along and the harvesting of tissues for medical research isn't prejudice when it comes to who donates the tissue.

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Yvonne wrote: "I was just wondering how many of you are planning on reading The Immortal Life of Henrietta Lacks this month?"

Bunnie,
I don't know if it's just me, but I can't read any of your comments.
All I see is "quotes" from previous comments made by other members.
Could you re-post your comments? --I'd really like to know what it is you're trying to say!
Thanks,
Yvonne

Sparkle,
It's great that we have an insider like you involved in this discussion.
Your explanations are clear, concise and very even-handed.

I was wondering if anyone has gone to Ms. Skloot's website and read the book discussion guide yet?
Here's a link, just in case:
http://rebeccaskloot.com/wp-content/u...

xoxox,
Yvonne

I finished it and loved it.

Has the attitude toward cell cultures changed with the advent of DNA testing and gene sequencing. I keep hearing that we should keep that kind of information private, but if your cells can be taken and propagated and used in many labs--how would your privacy be protected?

The cells we get have information that we need for our studies, such as sex, age, and if deceased how they died, but the privacy of the individual is protected, under no circumstances are the names and locations of the individual asked for or given. Of course with some of the information we do get, if someone really wanted to dig for the information I am sure they could get it.

Privacy issue was why the name of the donor for Hela was initially given as Helen Lake. For a very long time Hela was thought to have come from someone named Helen Lake. I can't say if the identity of Henrietta Lacks being revealed is a good thing or a bad thing. If I were to be given the choice I think I would have wanted to remain anonymous.

Yes, I know she should be given the credit for being the donor of such an important cell line, BUT for the protection of the surviving family I would have chosen to stay unknown. We know so much about Hela and it's genetic makeup I think I wouldn't be comfortable with that information being public, but that's my personal feeling on the matter.

Yvonne wrote: "Bunnie,
I don't know if it's just me, but I can't read any of your comments.
All I see is "quotes" from previous comments made by other members.
Could you re-post your comments? --I'd really like t..."

Yvonne wrote: "Bunnie,
I don't know if it's just me, but I can't read any of your comments.
All I see is "quotes" from previous comments made by other members.
Could you re-post your comments? --I'd really like t..."

Yvonne wrote: "Bunnie,
I don't know if it's just me, but I can't read any of your comments.
All I see is "quotes" from previous comments made by other members.
Could you re-post your comments? --I'd really like t..."

yvonne--i am not very good with this computer and i notice that some comments that are suppose to be mine aren't at all--don't know how that happens--so far i have really enjoyed all the books we are reading-i finished Emperor,Ghost Map,Stiff. Blood Work.Henrietta, and loved them all--so now what do you want to know-do you have this problem with your remarks being in the wrong place or credit given to someone else? no doubt my fault for my lack of computer skills,

Hi Bunnie,

Yeh -- I can finally see your comments! :)
No worries, of course. It's just that I've noticed your wonderful participation in the past and I always look forward to reading your contibutions to the group's conversations.

So what do you think of this book?

xoxox,
Yvonne

yvonne- this book is more of a social statement about black people and the treatment they received back in the 50's-- Johns Hopkins was built to provide that medical care for the poor.i am not sure if that care was the same for white people back then or not-an ethical question is "should she have been asked to give her cells at that time? --i don't think it was the habit to ask the patients for permission then--doctors were the Gods not to be questioned. even the nurses had to stand when the doctors came in--those cells have been used for research all over the world.now that Henrietta's family has found out the question is did scientists make money from the HeLa cells and should the family be paid for the use of them? i say no --but they could be offered medical care as a thank you for that gift.i did like the book--it illustrated the condition of black people back then and probably today in many cases. we still do not afford many poor people quality educations or the opportunity to get one.the family of Henrietta was an illustration of this lack of knowledge of even the basic biological facts.yes i loved the book yvonne.

It's been over a year since I read the book, so I can't cite many specific details. While I have much sympathy for the Lacks family, I come down squarely on the side of science. If everyone who donated cells, blood, organs, etc., had to be compensated, medical science would still be touting the wonders of leeches. I know that her cells were taken without permission of her family, but my guess is that if asked at the time, they would have agreed.
Is it fair that Henrietta's ancestors live in poverty while others have profited from her contribution - absolutely not. But I suppose this will just be a case of the needs of the many outweighing the needs of the few. (PLEASE tell me I DID NOT just quote a STAR TREK movie!!!!)

As regards the continued use of tissues to develop cell lines, the same sort of thing happened to a man named John Moore (white) who had hairy cell leukemia, in the 1970s. His spleen was removed and used (somehow). Moore found out and sued, and the case ended up in the Supreme Court. The Court ruled that once you leave your cells behind, you have abandoned your claim, and that any other approach would slow down medical advances. I am happy with this decision, since individuals would be hard pressed to effectively preserve, much less market, the materials that have been removed, so no one would gain anything.

phylwil,
I AGREE!! --SCIENCE WOULD BE SET BACK YEARS BY HAVING TO PAY EVERY PATIENT WHO HAD CELLS OR ANY ORGAN REMOVED DURING AN OPERATION-WHAT WOULD THESE PEOPLE DO WITH THESE CELLS ANYWAY? IT'S THEIR WAY OF DONATING TO HUMANITY,

I enjoyed this book. It was very readable. It is a great book to discuss, as there are several threads to be debated, although they do cross over.

The first issue is that of tissue or organ donation and informed consent. I believe that until relatively recently this was an issue for all races. A few years ago in Ireland there was a big uproar about organs been taken from still born children without the knowledge or consent of parents. (The hospitals looked after the removal of the body) I believe that this would also have been practiced elsewhere.
The second issue is of informed consent - again I believe that this was for all races. I believe that sometimes scientists believe and are doing good, but do not explain to other people what or why they are carrying out different research. This is clearly illustrated in the book. I believe that we are all accountable - scientists or not - to others for what we actively do by commission or omission.
The third issue is definitely racist. I was shocked to hear in this book of the experiments on syphillis on the black population in the US. It is because of such practices that the issues of consent and clear information are important.
I think that R Skloot has done a great service , as have the Lacks family, by allowing such a public debate on these issues.

granuaille--reading history tells us that every race has done terrible things to other races--just as countries have also--none of us is better or more innocent that anyone else--there have also been researchers that have experimented on themselves.

I am about 2/3 of the way through the book. I am a third year medical student and the issues surrounding informed consent are big ones. Despite the supreme court ruling, I don't think the issue of tissue ownership will go away. Actually, now with the advent of genomics, one can already see that gene patents and consent to use genetic profiles in research are becoming hotly debated topics. There was an interesting model put forth in Science regarding this, here is the link:

http://www.genepartnership.org/wp-con...

Would be interested to hear what people have to say about the Informed Cohort model. It's not quite the same as tissue, but I think it's more relevant to issues today.

On the note of race & class, I found this book to be much more insightful on the issues of african americans relationship to western medicine in the US than anything we read in the basic sciences portion of medical school (mainly covered the Tuskegee/Syphilis incident but hadn't heard about the terrible mississippi appendectomies)... and I'm not done yet!

Was it appropriate to marry the social justice issues of the Lacks family to the advances in science brought about by HeLa?

I am not sure if that is the right question. To me, it seems that Skloot does an excellent job of juxtaposing the great medical advances we have made against the lack of just distribution of those advances - one of the great paradoxes of american society IMHO. Many of the Lacks family are in need of basic primary care and preventative medicine...Interested to see where she goes with this theme.

Perhaps a more appropriate question is what is a just focus for our limited medical resources? The HeLa line, on the one hand, (roughly) symbolizes our health care system's focus on treatments over prevention. In my basic sciences of medical school, education on preventative medicine, public health and nutrition were relegated to 1 credit courses while we spent more time learning the intricacies of enzyme deficiencies that are seen in 1 in a million patients. We learned next to nothing on the social determinants of health and yet are tested extensively on the Lac Operon (no relation to Lacks) ! This is largely due to medical schools reliance on NIH funds which inevitably shifts the focus of the education to research and employment of PhD's. Sorry for the aside, but I can see the connection between the two - it's a question of focus. What do you all think?

testing

Great link, John -- thanks!

Granuaille -- I feel exactly the same way that you do.

When reading stories like this I can't help but think about what I would do if it had happened to me. I don't think I would be upset. Of course, I'm in a much better financial situation than Henrietta or Deborah, which I feel does make a difference.
This book also made me want to know if it hasn't already happened to me or someone I love. I can't help but wonder...

Phylwil -- your comment above reminds me of what the law says regarding a person's personal garbage: once you leave it on your curb for pick-up, it's no longer yours to claim.
Once left behind, whether known or unknown, when does your "stuff" (cells, garbage, etc.) no longer belong to you?

yvonne--what ever happened to altruism in the human race? not that i wouldn't love to be rich because of the use of my tissues to find a cure for something- humans have become greedy -and yet they say that 95% of americans have a religious belief--i personally don't and i would not mind if they used my tissues or my genome information for the advancement of science to benefit mankind without COMPENSATION.

John
I am not happy to hear that medical school hasn't changed since my brother went through in the 70's in regard to preventative care, public health and nutrition.

I agree with you, Bunnie.

As I said above -- I would NOT be upset if they had used my cells for further medical advancement, compensated or not.

Humans have always been greedy -- I think we just get to hear about it more often due to mass media.

yvonne--thanks for agreeing with me--not everyone does. the major question is how to get people to change their ways of living so they can be healthier-whoever answers that one will be a genuis-we could start with the children in the school system-teaching them more about birth control-the effects of drugs (legal and illegal)-and more about the body and information about it's functions.education in our country is in a terrible state --it needs to be looked to.

One of Henrietta’s relatives said to Skloot, “If you pretty up how people spoke and change the things they said, that’s dishonest” (page xiii). Throughout, Skloot is true to the dialect in which people spoke to her: The Lackses speak in a heavy
Southern accent, and Lengauer and Hsu speak as nonnative English speakers. What impact did the decision to maintain
speech authenticity have on the story?

I have to say, I couldn't obtain the book from my library (it's still a little too popular), so I got the audiobook instead. I have to say that the audiobook was very rich. Read by two different readers, this added such a depth to the voice of the book that I don't think I would have gotten having simply read the book. I'm very pleased that I made the decision to listen to the audiobook because I felt like I was hearing it directly from the horses mouth. It was more emotional for me. It was as if I were listening to them tell their stories in person. Very powerful, very rich, with added dimension.

Also, I'm sure that most of you have already heard this interview, but I'll post it here just in case. Terry Gross from Fresh Air at WHYY interviewed Rebecca Skloot early this year.

http://www.npr.org/2010/02/02/1232323...

I had not heard it. Thanks Travis!

travis-i just listened to the interview of the author Rebecca Skloot--i really enjoyed it-thanks --i will pass this on to some of my friends.

I’ve never before read a “historical” non-fiction where the author interjected herself so much into the story. A couple of times I thought to myself, “Whose story is this -- Rebecca’s or Henrietta’s”? I could almost hear Joe Friday’s voice in my head saying “Just the facts, ma’am”.

I understand that it was very difficult for Ms. Skloot to get information about Henrietta, especially from her family, and I can understand that to Ms. Skloot, that in and of itself was an integral part of the book, but I couldn’t help but think that she focused on it too much. Was this book about Henrietta and her cells or was it about Rebecca’s adventures while searching for Henrietta’s family?

If this book was written 100 years in the future, I think it’d be safe to say that all of Henrietta’s family (or at least those who know anything about her cells) would be long gone. An author would be forced to focus on facts alone. Would that make this story better or worse? I don’t know. All I know is that most of the “historical” non-fictions that I’ve read in the past focused much more on facts and not so much on this personal emotional rollercoaster that Ms. Skloot seems to be fixated on.

Of course, I mean no offense to Ms. Skloot. It’s easy to see that she put her heart and soul into this book and it is wonderfully written. I feel that Ms. Skloot did a fantastic job honoring Henrietta’s life and contribution to science, as well as the doctors and scientists that made it all possible.

Henrietta’s story is very bitter-sweet. If only she could have known about all the good that came out of her horrible illness. And if only her family had received some compen$ation…

yvonne, -if you go to the link HHP;//www.npr.org/2010/02/02/123232331/.i got this link from one of our readers and i listened to Rebecca's explanation for insertiing herself into the story and her role in helping Henrietta's family understand what happened to her and the cells taken from her cervix- i thought the story was well written and very human--if you want to learn about the HeLa cells i am sure you can find explanations in scientific journals somewhere--this story is about the human side of the story--the family and the author who did a magnificent job of writing about it. you are right about compensation--i think the Lacks family should be give access to medical care as a thank you to Henrietta for her gift.

yvonne--i just looked to see who is was that gave the link referred to--it was travis message 46-- aug 4th 2011 try it and let me know what you think.