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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
(http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/ |
"For Henrietta, walking into Hopkins was like entering a foreign country where she didn't speak the language." (pg.16) Do hospitals frighten you, whether you are a patient or a visitor?
John Hopkins Hospital: http://www.hopkinsmedicine.org/the_johns_hopkins_hospital/ Somewhere in those slides you can see the original building that Henrietta visited. Huge and impressive. One of the top hospitals in the country, they did treat black patients but segregated them in "colored" wards. Have any of you ever visited John Hopkins?
"Henrietta and Day (her cousin five years older) had been sharing a bedroom since she was four, so what happened next didn't surprise anyone." (pg.23) Was there an adult living in that household? Certainly Grandpa knew better; didn't care?
Why do you think this was allowed?
The year was 1941, Henrietta and Day got married and both worked in the tobacco fields. America was at war and the tobacco companies were supplying free cigarettes to soldiers. My husband, in the Navy then, remembered those and although he never smoked then, many of our soldiers started a lifelong addiction. Is there anything about war that we do better today?
Bethlehem Steel, 30,000 employees, a gold mine for black families: https://www.facebook.com/Bethlehem-Steel-Sparrows-Point-Remembered-130389707036916/ - click on the slide show and think of listening to that awful noise all day long. How do we prevent factory noise today for the workers?
What new thing or things did you learn about cervical cancer?
Doctors of this era were taking samples of cervical cancer without the patients' knowledge, using them for research. How would a person know if a doctor is still doing it today?
"the plasma of chickens, puree of calf fetuses, special salts, blood from human umbilical cords." What were these used for?
"Lord, it just feels like that blackness be spreadin all inside me" Henrietta said. What was she referring to? What moved you about Henrietta's life and death?
Had you heard of the Tuskegee syphilis study before?
Discussion Leaders: Ella, Adoannie, PatH
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I have had this book on my bookshelf since I bought it in 2010 and yesterday I was pulling books to send to Goodwill and into the bag it went. However, I was too tired to drive to Goodwill so after I saw this, back onto my shelf it went. I hope I have time with Latin and my Austen class to keep up and contribute.
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When are we starting? Ella says Oct. 1! Is that okay with you, PatH?
Mkaren, we are looking forward to your joining the discussion. This is a fascinating book. An engrossing story.
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Karen, I hope so too, it's such an interesting book and the author makes the science easy to read, easy to learn. And then there's the life of Henrietta....
WHO KNEW ABOUT HENRIETTA BEFORE THIS BOOK? IT'S AWESOME STUFF!
"No one knows who took the picture {on the cover] but it's appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls.........She's simply called HeLa, the code name given to the world's first immortal human cells-her cells, cut from her cervix just months before she died."
We hope all of you will join us in discussing this book.
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I just saw your post ANN. Yes, we are starting October 1st. So you have plenty of time to get to the library and get your copy and start reading.
The book is in 3 parts, we'll start, of course, with Part One. We are going to be different; we shall have no dates, we'll decide when to go on to the next part. Some parts are more interesting than others to discuss, so we shall just trip along merrily and see how it goes!!!
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I can get boring, OH, DEAR! But I want you to be sure to read the PROLOGUE: I quote:
""the family (Henrietta's family) had found out just a few months earlier that Henrietta's cells were still alive, yet at that point she'd been dead for twenty five years.
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Karen, have you read the book, or was it a failed TBR? For some reason, when it came out some remarks in the reviews put me off, so I never looked at it. But when I picked it up for this discussion, I couldn't put it down. It's a fascinating story, with lots of stuff to discuss.
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I'm going to check with my library today for the book. Sounds interesting.
Does anyone know if the discussion for middle September has been cancelled? I had that book on hold and was going to pick it up today.
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yes, Bella, we will discuss "Two Old Women" in November.
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Thank you Annie for responding. 😉 I was able to get both books today, so I will just renew them a few times. In the meantime, I'll glance over them.
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OK Will listen along.
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Kidsal, it's a really good story. You won't be sorry to be involved.
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My library has bookmarkers with suggestions for different kinds of books, like mysteries, historical fiction, biographies, etc., and BOOK CLUBS. I've read a few of them, we've discussed one or two and this book is on the book club list. My branch had a copy of it and I brought it home and was immediately interested in it.
It will, honest, intrigue you also. Get a copy.
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I read this several years ago when it was first mentioned here. It's a fascinating book/story. At that time, the author was interviewed on BookTV - and it might still be available on their web site. I probably won't reread this, but I'll lurk in the discussion.
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Great, maryz. Talk to us too from time to time, tell us what you think about the whole story.
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'll be in the discussion, too. I've started the book, and am fascinated.
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Here's the link to the 2010 BookTV interview with the author. (Can't believe it's been that long!)
https://www.c-span.org/video/?292685-7/immortal-life-henrietta-lacks
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What a wonderful interview, thank you so much for supplying the link Maryz. I am looking forward to reading and discussing this book even more so now after seeing the author and hearing how it all came about.
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I agree thank you Maryz for sharing the link. I look forward to the book discussion.
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Welcome, heavenseden. It's good to have you.
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I have the book, and would love to be able to join the discussion.
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Welcome, Robbie! We're glad to see you here.
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Thank you all for posting your interest. You won't be disappointed in the book. What a good group we have forming! Wonderful!
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Thanks for that link, MaryZ. Very interesting! What is the name of that other book that was written about cells that have been taken from patients? I will have to listen to the interview again.
Welcome to all who will be discussing this most interesting story with us. It's quite amazing!
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MARY, I just finished listening to our author on the site you provided. There was some static, but I think I heard most of it. And then I googled a few other sites on the Web including HELA. One could spend hours reading, but then I decided to just stick to the book.
The picture on the first page is of cells multiplying? "THERE ARE ABOUT ONE HUNDRED TRILLION OF THEM IN OUR BODIES, EACH SO SMALL THAT SEVERAL THOUSAND COULD FIT ON THE PERIOD AT THE END OF THIS SENTENCE" How in the world do they manage to separate them to get just one cell?
Actually I am reminded of a huge spider web in which the prudent spider has stored food for hard times.
Had any of you read this book before or heard of it somewhere? What caught your attention?
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I have never heard of this book before now, and after listening to the link MaryZ provided it got my attention. I know very little about HELA cells, and am interested in the whole story, especially Henrietta's family.
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I'm a chemist, not a biologist, but, like anyone who works in a biomedical environment, I knew about HELA cells, and the advances and setbacks of the research. What I dont remember is when we learned her name wasn't Helen Lane.
I never read thebook until now, though.
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I heard of the book when it came out, and got a sample for my kindle, but never got around to reading it until now (I have hundreds of free samples on my kindle). I've read the first bit, and am ready to go.
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(up late tonight, and I may sleep in tomorrow, so I'll post now)
Honestly, I don't know where to begin to discuss the book - the Prologue, Deborah's Voice - both full of interesting stuff we could spend a few days on, I was intrigued right from the beginning, but the book begins and unless you want to comment on either of those sections let's proceed.
"In those days, people didn't talk about things like cancer" -pg.14 Was that true when you were young? When did you first learn about the disease?
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Well, I am up late but will be turning in shortly. Heavens forbid I just realized it will be October 1st in just a few minutes and I have not read any pages of the book to begin this discussion. Are we going to have certain chapters to read and questions in the header like usual? If so, I will wait to see which chapters to read up to. Check back in tomorrow after grandkids volleyball games and cross country meets.
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Bellamarie, we are going to take Part One at first. That's a lot of pages, but if you read a part, 2 or 3 chapters, that will give you a good start. The story is very rich, shifting back and forth among several themes and times. We can get started on many of them in just a few chapters. There will be questions, posted soon, but in the meantime just comment on anything you find particularly interesting.
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At last, we can start. I'm with Ella in finding it hard to know where to start discussing the book. There are many stories twined together in the book: personal stories, Henrietta's, those of her children and family members, the medical story, the scientific, the ethical, the sociological, and that of Rebecca Skloot's crusade to dig out the whole story. I'm sure I've left out something here.
Ella asks about attitudes toward cancer in that time and your experience, and I would ask your first impression of Henrietta.
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And the author, Pat. So much to talk about. Did you read in the Prologue that the author failed freshman year in high school! Think you or I could write a book like this?
But back to Henrietta, I remember reading in this Part that Henrietta was born in 1920 into "a small shack on a dead-end road overlooking a train depot, where hundreds of freight cars came and went each day" and a bit of her lives on and on. I'm so amazed at all of it.
Aren't you?
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Reading along here and I had no idea that when you send in a swab to track your DNA for genetic study to learn where you ancestors lived that the cells on the swab are collected and kept in a national bank. Goodness all the stuff that is kept - from phone calls to our cells...
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We gradually get to know Henrietta during this section. At first, I saw her as a poor victim, passively accepting whatever happened to her. Then I began to hear more about her. She was the one everyone gathered around, everyone turned to when they were in trouble, always providing a meal, or a place to stay. we all know women like that, and every family that has one is blessed.
Here is a woman who is a force within her own universe, but as soon as she steps out of it, she is lost in a world she has no way of understanding or coping with. This is what discrimination does. In Henrietta's case, probably nothing could have saved her, but in other cases, this confusion could kill.
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In fact, the whole book is about this: two different universes, each unable to understand the other. And the author, rushing from one to the other, as lost in the Black universe as Henrietta was in the White, but trying to build bridges.
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My gosh, I read the discription of how the dr's treated Henrietta cervical cancer(knowing how powerful radium is) I was horrified! As a newborn, I was treated for an enlarged thymus gland using radiation but I don't know how powerful each treatment was. Not sure how often my mother had to take me for each treatment. I seem to remember it was 2 weeks of treatments. And it worked! But I read over the years that is wasn't necessary to treat an enlargement as it would return to normal size on its own! My mother said that the nurses were carrying me around showing everyone how beautiful I was because I wasn't red like all the other babies. But she was sure that something was amiss and asked the dr about it. So thats how it was treated in the '30's! Egad! I should light up a room!
To this day , I still wonder what Henrietta's dr's thought when she was so badly burned. The poor soul!
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I'm sorry to say that the horrific burns were very likely the standard result of the standard treatment. We are seeing the medicine of the time at its worst here, dealing with things they were just beginning to know how to treat. This treatment very likely gave people a better chance of surviving than anything else they knew to do, or than doing nothing, hard as it is to believe.
In Henrietta's case, given the aggressive survival of her cancer in the lab, I doubt that anything they knew then or we know now could have saved her.
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In fact, the whole book is about this: two different universes, each unable to understand the other. And the author, rushing from one to the other, as lost in the Black universe as Henrietta was in the White, but trying to build bridges.
The author is trying to penetrate this unfamiliar universe. Let's watch her as the story unfolds, and see how far she gets.
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Yes, Barb, it's disconcerting to think one's DNA might be on file somewhere. There's a possibility for real harm from misuse of the information, too. There's a lengthy afterword to the book describing the current legal situation in detail, along with current attempts to improve it.
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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
(http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/ |
"There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/
"For Henrietta, walking into Hopkins was like entering a foreign country where she didn't speak the language." (pg.16) Do hospitals frighten you, whether you are a patient or a visitor?
John Hopkins Hospital: http://www.hopkinsmedicine.org/the_johns_hopkins_hospital/ Somewhere in those slides you can see the original building that Henrietta visited. Huge and impressive. One of the top hospitals in the country, they did treat black patients but segregated them in "colored" wards. Have any of you ever visited John Hopkins?
"Henrietta and Day (her cousin five years older) had been sharing a bedroom since she was four, so what happened next didn't surprise anyone." (pg.23) Was there an adult living in that household? Certainly Grandpa knew better; didn't care?
Why do you think this was allowed?
The year was 1941, Henrietta and Day got married and both worked in the tobacco fields. America was at war and the tobacco companies were supplying free cigarettes to soldiers. My husband, in the Navy then, remembered those and although he never smoked then, many of our soldiers started a lifelong addiction. Is there anything about war that we do better today?
Bethlehem Steel, 30,000 employees, a gold mine for black families: https://www.facebook.com/Bethlehem-Steel-Sparrows-Point-Remembered-130389707036916/ - click on the slide show and think of listening to that awful noise all day long. How do we prevent factory noise today for the workers?
What new thing or things did you learn about cells or cancer cells?
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Having to only use the cells for certain research as the patient directs seems too limiting when it comes science. In Henrietta's case, she wasn't hurt when the dr took several slices of her removed tumor and gave it to Dr Gey to try to see if her cells would reproduce. And they certainly did.
As to Deborah's sister being used by dr's for experiments to see why she was not able to speak, IMHO, that was criminal. Those scientists probably didn't know about HELA and the resulting cell reproduction of Henrietta's cells. One thing never mentioned in this story is WHY her cells grew and no other cells from other cancer cells taken from patients over a long time didn't! Was it the culture used?
Amazing what a scientist will do to try another culture like Dr Gey's wife showing him how to get chicken heart blood without killing the chicken. But if he failed and killed the chicken, he gave it to his wife for their next meal! Good grief! But what would we (the people affected by all this science)had the dr's and scientists not been obsessed with finding ways to prevent a person from catching diseases by giving them vaccinations like the polio shot.
When my daughter and I perused the Women's Hall of Fame, we found that there were many women scientists who helped the male scientists produce lifesaving vaccinations but the men were afraid to include their names in their presentations to the AMA. And it wasn't the money as Dr Gey just gave away Henrietta's cells. Buuuuutt, as companies were formed to reproduce her cells and charge for them, the greed showed up, didn't it!
Ella, you have a book with a picture of reproducing cells on the first page? My book presents 1 picture of a HELA cell dividing into two cells on one page and two more pics on the next page telling about using stains with particular dyes so one can see the DNA in the nucleus is yellow, the actin filaments. Are light blue and the mitochondria--the cell's power generators--are pink. The picture is in black and white. And the pics were added at the end of the Lacks family pictures in the middle of my book.
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I somehow missed the technical point of why these cells are so useful. Are they cancer cells? Why are they useful in studies not involving cancer? how are cancer cells different from other cells? PAT, ANNIE HELP!
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I'm not a biologist, so I can only give you a general answer. One reason they're so useful is that, unlike most human cells, they are easy to grow and keep alive. You can't do an experiment if your cells die halfway through. Yes, they are cancer cells, and at first the research done with them was cancer-related, mostly trying to find a cure.
Cancer cells are mutated normal cells, but they are like normal cells in most ways, and scientists expanded to use HeLa cells for many different kinds of medical research.
Annie, it would be wrong to make money from the existence of HeLa cells, but it costs money in manpower, equipment, and supplies to grow them, and it would be reasonable to charge for this, along with a reasonable profit margin.
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Good question, Joan. I want to know too.
I have an easy yes/no question. Would this book have been written if the cells were removed from a white educated person? As I understand it at that time there were no laws stipulating that a person had to sign a consent form for removal of cells.
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Ella,
Would this book have been written if the cells were removed from a white educated person?
My answer is, yes. I don't think it would matter if she was black, white or educated. The fact they were the first ever living cells and what was able to be done with them to cure so many different types of diseases is the story, regardless, if Henrietta was black or white I believe this author would have tracked her down, and still wrote the story.
I have only read a couple of chapters and my heart goes out to Henrietta's family. This statement from Deborah's Voice just pulled at my moral fiber and heart:
"But I always have thought it strange, if our mother cells done so much for medicine, how come her family can't afford to see no doctors? Don't make no sense. People got rich off my mother without us even knowin about them takin her cells, now we don't get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don't got it in me no more to fight. I just want to know who my mother was."
Reading Henrietta's medical history and how she refused to follow up for different illnesses throughout her life, and testing positive for gonorrhea and had asymptomatic neurosyphilis but cancelled syphilis treatments, makes you wonder if these were causes of her cervical cancer.
As for the Grandfather allowing Henrietta and Day to be together, I have to assume that happened back in those days, and in those conditions. The term "kissin cousins" I think, probably came about because of this behavior.
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Bellamarie, your post brings out so many ideas, I don't know where to start.
Deborah's voice: it was a stroke of genius to start with that, it sucks you right in. The whole book is carefully and cleverly crafted. We will meet Deborah, and follow her journey as she comes to terms with her mother's story.
It's ironical that the family of a woman who did so much for medicine can't afford care. In a country as rich as ours, everyone should have access to adequate medical care.
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I don't think syphillis and gonorrhea have been linked to cervical cancer, but human papilloma virus, a mild STD that probably wasn't even detectable at the time, has a strong link, and may have been responsible.
Given the kind of medical care available to Black people then, and their justifiable distrust of white doctors, I can understand Henrietta not persisting with treatment of anything that wasn't causing problems. She did get successfully treated for gonorrhea several times, though.
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ANN asked this question:
" One thing never mentioned in this story is WHY her cells grew and no other cells from other cancer cells taken from patients over a long time didn't! Was it the culture used?"
Ann, it was my thinking from reading the book is that no other cells grew. They would put cells in petrie dishes but they died, that is why Hen's cells were so miraculous. They didn't die, but just kept multiplying.
However, Pat is our 'scientist" for this discussion so is that true, PAT?
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Yes. Cell culture is difficult, and people were still learning all the precautions needed, all the things that could go wrong, and everything you had to do to make it work. No one had yet grown cancer cells--other cells either, I think. Presumably HeLa cells grew because they are so vigorous you don't have to be careful. It wasn't the culture medium; they were using the same techniques as always. Later we'll see the downside of this vigor.
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This is an interesting site for information and actual pictures of the HELA cells in different variations.
https://en.wikipedia.org/wiki/HeLa
I'm not sure we will ever know for certain why Henrietta's cells lived vs others. I feel a little like her daughter Deborah, and see it's like maybe part science and part faith. Like she stated, "I really don't know how she did all that, but I guess I'm glad she did, cause that means she helpin lots of people. I think she would like that."
And like our author said, pg. 7 "I was a science journalist who referred to all things supernatural as "woo-woo stuff"; Deborah believed Henrietta's spirit lived on in her cells, controlling the life of anyone who crossed its path. Including me."
"The Lackses challenged everything I thought I knew about faith, science, journalism, and race.
PatH., I had no idea gonorrhea or syphilis could not cause cancer. I imagined the infections untreated would eventually cause break down of healthy tissue, and mutate into cancer cells. Interesting to know.
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I asked my daughter-the-doctor how cancer cells are different from other cells. She says that they keep on dividing. Normal cells have a mechanism that turns off cell division. Cancer cells have a mutation that disables this mechanism. So Hela cells are still dividing and increasing in number. they are, indeed, immortal.
But they are like normal cells in some other ways.
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Thanks for that link, Bellamarie. It's got some useful information on what we've been saying.
Syphillis doesn't turn cancerous, but it's got it's own nasty time bomb. If Henrietta hadn't gotten cancer, an had left the syphillis untreated, she would have gotten some serious neurological symptoms down the road.
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I am amazed at how they treated Henrietta with the radium: Wharton slipped a tube filled with radium inside Henrietta's cervix, and sewed it in place. He sewed a plaque filled with radium to the outer surface of her cervix and packed another plaque against. He slid several rolls of gauze inside her vagina to help keep the radium in place, then threaded a catheter into her bladder so she could urinate without disturbing the treatment. When Wharton finished, a nurse wheeled Henrietta back into the ward, and Wharton in her chart, "The patient tolerated the procedure well and left the operating room in good condition." On a separate page he wrote, "Henrietta Lacks...Biopsy of cervical tissue...Tissue given to Dr. George Gey."
pg. 42 Henrietta knew nothing about her cells growing in a laboratory. After leaving the hospital, she went back to life as usual.
pg. 47 But things weren't all good. Toward the end of her treatments, Henrietta asked her doctor when she'd be better so she could have another child. Until that moment, Henrietta didn't know that the treatment had left her infertile. In this case, something went wrong: in Henrietta's medical record, one of her doctors wrote, "Told she could not have any more children. Says is she had been told so before, she would not have gone through with treatment." But by the time she found out, it was too late.
Then she has acute Gonorrhea superimposed on radiation reaction.
The skin on Henrietta's breasts to ther pelvic was charred a deep black from radiation
Henrietta just nodded and said, "Lord, it just feels like that blackness be spreadin all inside me."
I can't even begin to express my sadness for what she has gone through. Not only are her cells taken and used without her permission, she is not informed it will leave her sterile, but now has Gonorrhea, and her skin is charred from the radiation. This woman just seems to me to have had a pain tolerance and love for life beyond imaginable.
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One small comment - we have to remember that we cannot judge these treatments with today's knowledge and standards. In many cases, it would've been the best care that was known and available at the time. They knew radium and x-rays could be used, but had no clue as to the dangers involved.
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My daughter tells me they still treat cervical cancer by putting radium inside. Ouch.
""Told she could not have any more children. Says is she had been told so before, she would not have gone through with treatment."
Johns Hopkins at the time had a reputation for, when Black women came in to have a baby or other operation, performing a procedure to make them infertile without their knowledge or consent. This may be one reason why (as seen on her medical record) in the past, whenever the doctors recommended a procedure, Henrietta refused it.
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Yes, something had to be really hurting or bleeding or incapacitating for Henrietta to overcome her distrust enough to be treated, and she wasn't altogether wrong.
Maryz, you're right. That was pretty much the best treatment available then. When it worked, which it sometimes did, it was presumably better than dying of cancer. Now, even when they use radium, the doses are much more carefully calculated. And techniques for aiming x-rays are much more refined, so that horrible x-ray burns such as Henrietta suffered can be avoided.
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Other stories in this chapter:
The other side of the tracks: The town of Clover. Southern Virginia. This book was written in 2010 and I doubt it has changed much. Here is a funny youtube about the town: https://www.youtube.com/watch?v=zAkcH5bUyNM
Didn't you smile at Cootie, a cousin of Henrietta's, who stopped our author and told her where to find Henrietta. A polio victim, he never let it defeat him; he built his own house, tore it down to put in insulation and then had to rebuild because it had burned.
"You know, they said if we could get all the pieces of her together (Henrietta) she'd weigh over eight hundred pounds now....and Henrietta never was a big girl. She just still growin."
And still being talked about.
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Oh heavens do not misinterpret my concern about the radium treatment for "judgement", I was only stating I was amazed that this type of procedure was done, placing it directly inside of her. I had NO idea that was even possible, and the horrible burning it was doing to her skin, when I read that I just hurt for Henrietta.
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I posted on my Facebook I was reading this book with the online book club. My friend who lives in Myrtle Beach responded and said her daughter Renee, (my Goddaughter) worked with HeLa cells for 3 yrs at the NIH in Bethesda Maryland. I asked if she was familiar with the story of Henrietta Lacks and she said yes, that Renee told her about the story of where the HeLa cells first originated. This is where she worked:
https://en.wikipedia.org/wiki/National_Institutes_of_Health
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That's where I worked too, Bellamarie, in the 14 story red brick building that forms the back part of the complex in the picture. The lower addition in front was just being built when I retired. My lab was on the other side of the building, on the 11th floor, so there was a nice long distance view out the window when one had time to look.
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Bellamarie, I think we all hurt for Henrietta and the pain she suffered, and even more for the waste of a life cut short. She was happy in her life among a large extended family, enjoying her children and looking forward to more.
Just a picky detail to keep the record straight, it wasn't the radium that caused the skin burns, it was the following x-ray treatment.
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Thanks PatH., for the picky detail, I've gotten so involved in this story and am reacting, I may misstep. Glad you are there to catch it. Did you ever actually work with the HeLa cells when you worked there? Small world to hear this is where you worked as well.
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I have been telling my DH about this book. His comment was that he doesn't understand why we haven't discovered a cure for cancer. My only explanation is each named cancer probably requires a different treatment. I just had a "squamous" cancer removed last week. It revealed itself looking a boil on my leg and it required a 4 to 6 inch cut to remove all the cancer growth. Stiches will be removed next Monday but it will take months for site to heal completely. This my third cancerous skin growth to be removed. Had one Basil cell, then a melanoma and now a squamous. I am afraid to ask what to expect next! 😍😍😍
I feel like a lab rat!
Loved Cootie's stories about Henrietta's kindnesses to anyone who showed up on her doorstep! Wish he had remembered more about H's daughter, Elsie. Later in the book there is a story about Deborah's thinking about her sister's Elsie's death and she thinks that Elsie was in a group of patients that were who being put through some nasty testing at the Negro Insane Assylum. And she hates that she never knew that she had a sister. Elsie died after Henretta when she was 15.
I think the author has done a remarkable job of taking us into the Lacks's lives as the family grew
older. I wonder if any of the Lacks family have put this info up on Ancestry.com. I must go look!
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so,I checked out Ancestry.com and found a copy of Henrietta and Day's marriage certificate but so far no Lacks tree. That does not mean there isn't one! Means I need to look again!
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Back to the cell cultures. We seem to have two different stories in this Part I and we do go and forth as we come to them or skim back. The family and the lab.
Are these the two universes JOAN that you mentioned?
So that is where our PAT has been working all these years and why she knows so much about such things, scientific things. What was your major Pat in college? I am so happy you are with us to answer so many questions.
Here's one I thought of and I have probably read it or skimmed it in the book. The cells that were removed from Henny were cancer cells and as they discovered they never died they started giving them to other labs. Were the cells still cancerous? Or was there a way to take the cancer out of these HELA cells?
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My major was chemistry, with a minor in zoology. I never worked with cells, mostly with things that come in bottles, so my knowledge is just that of an informed outsider.
The HeLa cells would still be cancer cells; they don't know how to take that out. They would not be a danger to the people who worked with them, though. They couldn't give someone else cancer.
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HEAVENSEDEN, are you still with us? PLEASE COMMENT, TELL US WHAT WE ARE DOING RIGHT AND WRONG IN THIS DISCUSSION. WE WANT YOUR IN PUT AND YOUR INTEREST!
ROBBIE, ARE YOU NEW TO THE BOOK DISCUSSIONS? WE WELBOME YOU, IF SO, AND WOULD LOVE TO KNOW WHAT YOU ARE THINKING. PLEASE POST!
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KAREN, MARYZ and all other lurkers, pull up a chair and join in.
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ELLA: "The family and the lab.
Are these the two universes JOAN that you mentioned?"
yes, and more narrowly, the White world and the Black world.
The world of the lab is foreign to the author, but being white and middle class, she has enough in common with it's inhabitants (in education, culture and above all confidence that she has a right to go in their and ask questions until they make the effort to be sure she understands) to navigate it and study to understand it. And we have enough in common with her (the same things) that we can understand, or are able to ask questions until we do.
Henrietta is from such a different world, she doesn't know what questions to ask, how to make people take them seriously and answer, and when she gets an answer, it might as well be written in Greek.
For example,we'll never know whether she wasn't told she wouldn't be able to have children, or whether she was told in technical terms she had no way to understand. If my doctor tells me something I don't understand, I tell him and ask him to explain. But being white, middle class, and educated gives me the confidence that I have A RIGHT TO UNDERSTAND. Henrietta, in 1950, had no such right, and knew it.
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This is such an emotional book to read. I find myself loving Henrietta as much as her family and friends. I just want to shake my head at how the doctors would not pay attention to the many times she said she felt the cancer was spreading inside her, before her body was filled with tumors that would prove to kill her. I realize there would have been no cure for Henrietta back then even had they found the tumors earlier. It was heart wrenching when Day was told to stop bringing her kids to see her.
What a shock it was to read ch 7 The Death and Life of Cell Culture: Back in 1912 Alexis Carrel, a French surgeon at the Rockefeller Institute, grew his "immortal chicken heart."
Scientists said Carrel's chicken-heart cells were one of the most important advances of the century... Carrel was a scientific messiah. Magazines called his culture medium "an elixir of youth" and claimed that bathing in it might make a person live forever. But Carrel wasn't interested in immortality for the masses. He was a eugenicist: organ transplantation and life extension were a way to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite. He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else. He'd later praise Hitler for the "energetic measures" he took in that direction.
Years after Carrel died awaiting trial for collaborating with the Nazis, scientist Leonard Hayflick grew suspicious of the chicken heart. No one had ever been able to replicate Carrel's work, and the cells can only divide a finite number of times before dying. Hayflick investigated them and concluded that the original chicken-heart cells had actually died soon after Carrel put them in culture, and that, intentionally or not, Carrel had been putting new cells in the culture dishes each time he "fed" them using an "embryo juice" he made from ground tissue. At least one of Carrel's former lab assistants verified Hayflick's suspicion. But no one could test the theory, because two years after Carrel's death, his assistant unceremoniously threw the famous chicken-heart cells in the trash.
Either way, by 1951, when Henrietta Lack's cells began growing in the Gey lab__ just five years after the widely publicized "death" of Carrel's chicken-heart__ the public image of immortal cells was tarnished. Tissue culture was the stuff of racism, creepy science fiction, Nazis, and snake oil. It wasn't something to be celebrated. In fact no one paid much attention to it at all.
I suppose you had all sorts of kooks like Carrel, looking for fame, fortune and ways to exterminate those they did not deem fit to live. I can see why people were skeptical. That's the thing with science, we can use it for good or evil. I often wonder why we have not been able to find cures for more cancers. I know I have read articles where to cure it would put pharmaceuticals, doctors, and hospitals out of business. I sure wouldn't want to think there is any truth in those theories.
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It is indeed an emotional book. And after Day was ordered to stop bringing the children to see her, he would bring them to play outside where Henrietta could drag herself over to her window and watch.
I think the reason there haven't been more cures for more cancers is it's an incredibly difficult problem. In fact it's more than one problem, as there are many different kinds of cancers.
I know I have read articles where to cure it would put pharmaceuticals, doctors, and hospitals out of business. I sure wouldn't want to think there is any truth in those theories.
I don't think there is much truth in that. I'm sure there are people with that sort of motive, but there are too many hard-driven people working on the problem, too eager to find answers, for them all to be stopped.
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ELLA: "The family and the lab.
Are these the two universes JOAN that you mentioned?"
yes, and more narrowly, the White world and the Black world.
Now we're about to get down to the White world and the Black world. The author is going to have to enter the Black universe of Henrietta's family, no longer legally segregated, but still emotionally apart, and understand it, compassionately and non-judgementally, in order to earn their trust before they will be willing to talk to her.
It's going to be quite a journey.
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Unless you walk in my shoes, you will never understand me. Our author has tried you think, PAT? I never thought that way when I was reading the book; I thought our author had done a pretty good job of explaining, quoting, expressing the black world of Henrietta's family, children and relatives. Where did she go wrong?
Deborah said that the doctors tell her marvelous stories about all the wonderful things her mother did, like going to the moon, made polio vaccine, and all, but they never said how my mother did it. (Deborah's Voice) Did she ask? Couldn't she ask? Was she afraid if she asked her ignorance would show up? She was black, the doctors were white, they were educated, knew how to cure.
Is that the universe the author has to travel? Did she?
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Of course, all of us know a little about cells from courses we took in school but beyond knowing they multiply and die that is all I knew. I never thought of research on cells and growing them in petrie dishes and how much science learns from them. PAT, is your job interesting or do you do the same thing every day? Can science be boring, watching daily what cells are doing, hoping for a change?
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Ella, I've been retired for 17 years, but I did find my job interesting. I never had anything to do with cells. The details can sometimes be boring, but you care so much about the results you don't find it so, and there wasn't much repetitiveness in what I did. I always enjoyed it. A friend said he felt he was being paid for playing in the sandbox, and that about sums up my feelings too.
I don't think the author went wrong in putting us in others' shoes. I think she's doing a remarkable job of putting us there, and did an equally remarkable job in putting herself there. We can all decide when we've finished the book.
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I love how the author was determined to talk with Henrietta's family to the point she drove past the same store over and over again where the black men stood watching her. Myself, I would have been afraid to go there by myself with a car with no muffler, making all that noise. That actually made me laugh picturing those black men watching her, knowing she was a fish out of water.
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Yes, I laughed too. It took a lot of courage though--she couldn't be sure what she was getting into.
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PART TWO - DEATH!
The first chapter is THE STORM. It took a few pages of reading to determine what/where the storm was. I am finding Rebecca Skloot unnecessarily dramatic in telling the story of Henney's life and death. Is anyone else?
Henrietta died of uremia, the buildup of toxins normally flushed out of the body in urine I have a few pills in my bathroom cupboard that would have cured her of that. However, her uretha was completely blocked by tumors and I have no pill for that. It's sad! Tumors the size of baseballs!
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FDR - whom I thought would be president forever as a child, had polio all his life and ran the country while WWII was raging. Admirable president!
Do any of you remember the MARCH OF DIMES? And now we know where the money went and what it was used for.
Isn't this chapter fascinating?? What did you learn from it?
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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
| (http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
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http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/
Part One: LIFE Oct. 1-8
Part Two: DEATH Oct 9-?
How was the polio shot discovered and by whom?
Do you remember the March of Dimes and how it was publized?
What were some of the improvements HELA cells brought to the field of tissue culture?
The story of the HELA cells leaked so why didn't the family know about it? What prevented that?
Do any of you remember the fear of tuberculosis?
TOO YOUNG TO REMEMBER! If you were the author of this book would you have felt the necessity of putting this chapter in the book. Does it ring true to you? What was the purpose?
The author often places herself in the book. Is this a good way to write a book.
What kind of book could this be classified as?
What did you think about the prisoners volunteering for immoral and deplorable experiments? Should it have been stopped by authorities?
Discussion Leaders: Ella, Adoannie, PatH
I missed yesterday and part of today glued to the baseball playoffs. Now I'm completely confused. Have we gone on to The next part? How long is it?
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JoanK., I missed today with my grandkids sports. Yes, it appears we have moved on to Part Two. I will have to begin reading it. Be back after Sunday Mass and more grandkids sports.
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hello ladies
Sorry to join the discussion so late in the game. I ordered the this story on the 29th and only received it on the 7th. I do not have the book I ordered the audio book and have only listened to the first 2 disks so far. I use unabridged audiobooks because I have developed monovision and of recent drs think I have to a small cateract in my reading eye and should reserve reading for my studies and mail and such to lessen the strain. (difficult because I used to be whats called a super reader.)
I have read the board two things popped out for me. One is the conversation about the cells and why we don't have a cure for cancer. I think it goes back to what the instructor said in the authors first class. That any tiny cell change anywhere within the cell structure or development can cause things to go amist. Without being able to replicate a normal cell what we could learn about a cell was limited. To understand how a cancer cell works you must first be able to understand the difference between it and a normal cell. so if you can not reproduce a cell to study well you can see the problem. This is what makes what happened with henriettas cells so important and miraculous.
There are so many types of cancer because there are so many types of cells. Anywhere along anyone one of these cells development things can go astray. Different types of cells do different things just think of all the types of cells there are: skin cells bone cell bloods cell organ cells lymph cells muscle cells nerves cell etc. you see my point? Each cell type has a different function in the body hence the potential for different types of cancer. So when ask why haven't solved cancer perhaps we should rather think what have we done for this kind of cancer or that kind of cancer. For of us to make any head way with any type of cancer we must understand how a cell replicates because it is this area that causes a cell to be cancerous. The abnormal proliferation of structurally abnormal cells.
The other conversation that interested me was the about how noble and altruistic the author is. For me the jury is still out. I do not see her as altruistic as much as i see her obsessed. At this point I see her as no better than any of the others that approached the family. She wanted something and they got nothing.
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here is a clip from popscience
Five Reasons Henrietta Lacks is the Most Important Woman in Medical History
1. Before HeLa cells, scientists spent more time trying to keep cells alive than performing actual research on the cells. An endless supply of HeLa cells freed up time for discovery.
2. In 1952, the worst year of the polio epidemic, HeLa cells were used to test the vaccine that protected millions.
3. Some cells in Lacks's tissue sample behaved differently than others. Scientists learned to isolate one specific cell, multiply it, and start a cell line. Isolating one cell and keeping it alive is the basic technique for cloning and in-vitro fertilization.
4. A scientist accidentally poured a chemical on a HeLa cell that spread out its tangled chromosomes. Later on, scientists used this technique to determine that humans have 46 chromosomes—23 pairs—not 48, which provided the basis for making several types of genetic diagnoses.
5. It was discovered that Lacks's cancerous cells used an enzyme called telomerase to repair their DNA, allowing them, and other types of cancer cells, to function when normal cells would have died. Anti-cancer drugs that work against this enzyme are currently in early clinical trials.
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I have just finished reading all of the last posts,(Like JoanK, I am a baseball nut)!
I am ready for Part Two.
HEAVENSEDEN! What a fascinating two posts and your explanation of cell division is fascinating and
I now think I am more aware of why its so hard to cure cancer. Too many different cells. Different
scientists interested in different types of cancer.
ELLA-yes! I remember the March of Dimes! Now we have all those walks and runs for breast cancer and other kinds of cancer.
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Yes, we're moving on to Part Two, Death. As always, we can still continue to discuss Part One as well.
JoanK, it's as long as Part One, but we'll kind of discuss it in order, so just read some, and wade right in.
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Heavenseden, I would find it very difficult to switch to audiobooks. I ofter look back and forth in the text I'm reading. Hope it works better for you.
I don't see the author as altruistic so much as sympathetic toward the Lacks extended family, which isn't something the family has seen much of. She is definitely obsessed. We'll see if this is good or bad.
That's an interesting list of advances made with HeLa cells. I remember, when they found we had 46 chromosomes instead of 48, feeling sorry for the generations of students who had had to count chromosomes and try to find 48.
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HEAVENSEDAN: Your posts are very interesting. Thank you. The advance that is in clinical trial sounds interesting.
" So when ask why haven't solved cancer perhaps we should rather think what have we done for this kind of cancer or that kind of cancer."
That's true. I think of the people I've lost to cancer, and forget that I, and probably some of you, are cancer survivors, thanks to the advances that have been made.
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OH!! Welcome HEAVENSWARD! We are happy you posted and although my old/weak brain has not understood a lot of this, your one statement came though:
" Scientists learned to isolate one specific cell, multiply it, and start a cell line. Isolating one cell and keeping it alive is the basic technique for cloning and in-vitro fertilization."
Now that straightens out one of my questions, but I have this one still. Henriette had cancerous cells which, we have read multiply amazingly and used for research the whole world over. But they were CANCEROUS cells. Were the labs able to remove the cancerous part of the cell or didn't that matter in the research? I would think it would have.
Stay with us HEAVENSWARD. We need your input!
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Ella Gibbons
thanks ella for calling me out of lurking once I got the book.
Were the labs able to remove the cancerous part of the cell or didn't that matter in the research? I would think it would have.
in some cases where you want a cell to learn about a particular type of cancer you want it to be a cancer cell. In some cases as in the case of polio you just want cells and the type does not matter just the quantity. In the later case whether the cell had cancer did not matter only how it reacted to the vaccine. The fact that is was cancer cell was just was a bonus because it meant more cells to test due to the speedy proliferation of cancer cells.
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So am I understanding this correctly? Dr Gey was able to use the right medium for keeping H's cells alive and dividing like eager rabbits. Also they have never quit dividing over the last 60 or so years. And it's the cells that do this and continue to live that are so important for science. The fact that Henny had cancer really wasn't the important factor but that her cells
lived! Dr Gey was sure they would die after a few days which he told his assistant, Mary Kubicek.
So it was Margaret Gey who developed the making of the medium and the care of the cells which
she taught to Mary, right? Hello, Ladies!
Now we go to part two which is also minding bending! And we start right off with the autopsy of
Henretta Lacks!
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ADOANNIE
Dr Gey was able to use the right medium for keeping H's cells alive and dividing like eager rabbits. Also they have never quit dividing over the last 60 or so years. And it's the cells that do this and continue to live that are so important for science. The fact that Henny had cancer really wasn't the important factor but that her cells lived!
It is because the virlence of the strain of cancer that she had that I believe caused the cells to keep dividing. The dr. say he is surprised at the speed and aggressiveness of her cancer when he first meets her. Today we can through cell manipulation immortalize cells. But with all the new cell lines to this day none replicate as fast as hela cells.
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"It is because of the virlence of the strain of cancer that she had that I believe caused the cells to keep dividing" - Heavensward
Cancer - so from this we can understand how quickly some cancers can spread throughout the body? Am I understanding this correctly?
Gosh, I don't know where we are in the book, but that's okay, we are learning new things about cells and the body.
THE HELA FACTORY - let's start with Chapter 13:
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I 'm old enough to remember the March of Dimes, although just a child. At about this time Dr. Gey developed a process called "growing in suspension," discovered that HELA cells were susceptible to polio and learned how to ship the cells across the country to other scientists. Wow, all this in just two pages, hahahahaaa
And the government built a factory on the campus of Tuskegee Institute to provide jobs and training opportunities for young black students.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458465/
Once inawhile the government does something right!
What are your thoughts about all of this??
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Ouch just the mention of Tuskegee Institute and the awful awful 40 year experiment with syphilis where black men were the guinea pigs so that I was curious if the cancer cells were also administered to Blacks and found this -
http://www.nbcnews.com/id/41811750/ns/health-health_care/t/ugly-past-us-human-experiments-uncovered/#.V_u0s8lLNzw
I remember how prisoners were made guinea pigs and the change over when a prisoner could volunteer - never did learn if that shortened their time in prison or not but it appears we infected far more than prisoners with various diseased cells. Another site I found trying to minimize what happened in Alabama explained how in the 60s and 70s we infected elderly Jewish patients with cancer cells. All this during our lifetime is painful and yet, it is a way of life where people were marginalized by race, religion and gender - we forget and probably because it is so painful.
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Ella and Barbara, please no more links!? Now we are reading the book plus the links and that is about all I get done for the afternoon. Kidding just kidding! 😋
I have a question. Am I recalling incorrectly that for children under 3, there was a liquid developed as a vaccine against polio virus?
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For me, the most poignant of these bad examples is Willowbrook State School for Retarded Children. The children weren't capable of giving consent, but the parents were. It was the only facility for retarded children available in the state, and in order to have their children admitted, the parents had to sign a consent form allowing medical experimentation. So if you can no longer care for your child, your only option is to give them over, knowingly, to this kind of treatment.
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Annie, my children were given their polio immunizations as an oral liquid in the 70s.
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BARBARA. this huge factory was built to produce and ship HELA cells, no experiments on people, but here is a amazing fact:
"Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus - and at the same time - that state officials were conducting the infamous Tuskegee syphilis studies
The Tuskegee staff grew to thirty-five scientists and techicians who produced twenty thousand tubes of HELA a week.
ANN, I am older than you and I remember all people had to go to go their nearest school where you got in line and all of us, children and adults, were administered a little cup of liquid that we drank. This, before the shots.
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PAT, I just read your post, how awful that such a consent form was required. I'm sure that is no longer true.
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I'm sure too. It's one of the bad examples in a medical ethics course required at NIH for anyone who even conceivably might come near a patient. Tuskeegee was another.
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Ella Gibbons
Cancer - so from this we can understand how quickly some cancers can spread throughout the body? Am I understanding this correctly?
you got it.
And the government built a factory on the campus of Tuskegee Institute to provide jobs and training opportunities for young black students
undergrades would not have been used here. The author may not have meant Tuskegee Institute students. They were most likely meharry students which could have included alumni.
Many of the doctors scientist etc more than likely were trained at meharry one state over in Tennessee.
It was the first black medical/dental/pharmacy/nursing/public heath school in the nation.
Meharry Medical College, located in Nashville, Tennessee, United States, is a graduate and professional institution affiliated with the United Methodist Church whose mission is to educate healthcare professionals and scientists.[1][2] Founded in 1876 as the Medical Department of Central Tennessee College
The college was named for a young Scots-Irish immigrant salt trader named Samuel Meharry, who was traveling through the rough terrain of Kentucky when his wagon suddenly slipped off the road and fell into a swamp. Meharry was helped by a family of freedmen, whose names are unknown. This family of freed slaves gave Meharry food and shelter in the night. The next morning they helped him to recover his wagon. Meharry is reported to have told the former slave family, "I have no money, but when I can I shall do something for your race."[5]
In 1875, Samuel Meharry, together with four of his brothers, donated a total of $15,000 to assist with the establishment of a medical department at Central Tennessee College.[5] With the contribution of the Freedman's Aid Society of the Methodist Episcopal Church North, George W. Hubbard and John Braden, an English Methodist cleric, were able to open the Medical Department of Central Tennessee College in 1876.
Meharry Medical College was chartered separately in 1915. It is currently the largest private historically black institution in the United States solely dedicated to educating healthcare professionals and scientists.
My senior year in high school I was 15 and worked at willowbrook in the baby wing. It was one of the saddest experiences of my young life. Some of the things I saw.... Many of the parents just dump their kids off and never looked back. They would come once a year or never. Many could afford to take care of their kids 70% of them but just wanted them out of site. A male friend from my school we started there together worked with the adults which was so dangerous because they were mentally insane as well as retarded. They were big and strong they would fight or ask for sex. It was a mess. 6 months later after the death of the 5th child I quit just could not take watching them die.
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Oh my heavens my head is spinning!!! I am so far behind and just read all your posts. Heavenseden, thank you so much for all your information. May I ask how you come about so much knowledge? Have you worked in science labs? You seem to know this first hand. I am just amazed at all the information you were able to provide us with. Your story of working at willowbrook is heartbreaking.
Heavenseden, The other conversation that interested me was the about how noble and altruistic the author is. For me the jury is still out. I do not see her as altruistic as much as i see her obsessed. At this point I see her as no better than any of the others that approached the family. She wanted something and they got nothing.
It's interesting to me you brought this up, because it has been in the back of my mind, and was hoping somewhere in the book we will be told if this author compensated the Lacks family in any way for their help with her book.
Okay I must go begin reading part two.
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IMHO, the author really shows us how poor Lackstown's black population was and the first thing she tells us is how Henrietta's body was delivered to her home, where her best friend, Sadie, and her sister,!Gladys, were awaiting to get her body cleaned up, clothed and made to look better using her make-up including her red nail polish. This could mean that her family could not afford to pay the undertaker to get the body ready for the viewing. That was held in her home and in pouring down rain, Day had four of his children with him as they made their way , through the mud and rain, to the cemetery. The gravediggers had finally found a place for her body which was near her mother' grave. And as they lowered the pine box into the grave, the sky turned almost black and the rain and wind and the lightening tore across countryside causing fields to burn, trees to be torn up by the roots and a man killed by the roof of his house falling on him after the wind dumped him out of the house and into his garden.
I liked what Henrietta's cousin, Peter, told the author about that storm! He felt that Henrietta was trying to tell them all something important. And she wanted them to pay attention! He laughs as he tells the author how Henny never minced words and got right to the point! I wonder if she knew how famous she became. But, it was 20 years before her family ever heard about the HeLa cells. And they were totally confused by the story that their mother's cells were helping many scientists of many different genres in medicine to save lives.
Barbara, the link to the NBC NEWS story about all the experiments that our Drs and Scientist have been allowed to do and for so many years and now in other countries just blew me away.
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bellamarie
May I ask how you come about so much knowledge? Have you worked in science labs? You seem to know this first hand.
I minored in by biochemistry and early on in my life chased my own medical obsession.
ADOANNIE
This could mean that her family could not afford to pay the undertaker to get the body ready for the viewing.
It had nothing to do with money and all to do with the culture of that time. Southern culture blacks and whites
alike had viewings in the home. To receive and clean the body was an intimate act performed by the female elders to insure the private dignity of the dead. If the dead was male the male elders would wash shave and dress him. They would never leave such a task to non family members at the funeral home.
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Yes, my grandfather died in 1946 and he was not only prepared at home but waked in a neighbor's home with a big drinking party - everyone stayed up the entire night and some fell asleep in their chairs with kids on the floor, some under the table created with saw horses and boards covered with the best lace trimmed table cloth and holding the coffin - I think my father was the first in the family to be taken care of by a funeral home and he died in 1969.
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We had a discussion about Eco friendly burials when still connected to SN and preparation of the body and home viewing plus burial in natural cemetery plot was discussed. Many cemeteries have natural areas used for eco friendly burials. And there are many ways to bury ashes offered by companies who are trying to save the reefs so they take the ashes out to designated areas off our coasts.
But, Barbara, I didn't know that families were still doing the body preparation as late as the '60's.
My father died in 1947 and he was taken care of by the local funeral home.
Heavenseden, we now have and do body preparation plus home viewing in many places even NYC!
So I have read all about the HELA factory at Tuskegee and how that came about. The book says that "a staff of six black scientists and technicians built a factory at Tuskegee" but the information that you provided about Meherry and the possibility of the staff coming from there. Fascinating!
And the people who arranged the whole operation were very thorough and well planned.
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Heavenseden, that was quite an experience for a 15 year old, working at Willowbrook. I'm not surprised it became too depressing. Henrietta's oldest daughter, Elsie, seems to have been in a slightly better place, but still not very good.
My own experience with institutions for retarded individuals has been much more fortunate. My oldest daughter was retarded, and when we could no longer care for her, at age 13, she went to live in the local institution, where she got good care, some schooling and physical training, and was close enough for us to visit frequently. After a few years, she moved to a community placement, sharing an apartment with another retarded woman, quite close to us, cared for 24/7, with an active community life. She lived there the rest of her life. Maryland is one of the best states to live in if you need such resources.
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PatH., It is so nice to hear about facilities that give good care to the mentally retarded. My cousin also lives in such a facility in my small hometown of Monroe Michigan. He remained at home until my aunt and uncle died and then was placed in this facility where they actually drive him to a place to work for the mentally challenged so he can have some form of money to spend on himself. His sister is able to bring him home with her for day or weekend visits. He is very happy there and it is perfect for him getting proper care.
heavenseden, Good for you! I am impressed, and happy to have you with us for this discussion.
When I think of cremation, and disposal of the ashes, I think I would not want to dispose of them. I personally feel I would want to keep them in a special urn, and know my loved one is close by. Is that morbid?
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And I read on. Tuskegee couldn't keep up with all the new developments and demands and as usually happens someone steps in. A couple of men, called REader and Vincent built a glass- enclosed room in the middle of a huge factory warehouse that had been used for making Fritos. They had decided there was profit to be made in shipping cells, called themselves Microbiological ASsociates, and they further hired consultants to help in the business.
Also by this time medium and equipment had been standardized, a big step in growing and selling cells.
I've read more stories of entrepaneurs just like the two above taking risks, going out on their own, and making it big. That's part of America to me; my own husband did that and we had some lean years for awhile but with hard work we succeeded in lived comfortably.
Off the subject for a couple of minutes. Has anyone ever read Ted Turner's book? He was convinced that a 24/7 news program would be successful on TV (At the time all stations signed off at 12), and so he begged, pleaded with friends and banks to get the money to start it and we have CNN. Later we had TCM ( Turner Classic Movies) which I like to watch, I remember all of the actors and I get a nasty pleasure of knowing they don't look like that anymore, if they are alive, they look more like me.
But back to the book ---------
After Hen's death, all her family from close and afar came to talk and cook and visit each other.
And what happened then?
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After the funeral, when the family all came together, it was discovered, weeks later, that someone had brought tuberculosis. Henrietta's children, Sonny, Deborah and baby Joe all between 1 and 4 yrs, tested positive for TB. And baby Joe spent the next year in the hospital, very ill. And after that, he was passed around from cousin to cousin. H's husband, Day, had to work 2 jobs to support the family. Because of this, 16 yr old, Lawrence dropped out of school to take care of his brothers and sister. Because he got a false ID saying he was 18, he was soon drafted into the army due to the Korean War. And now cousin Ethel and her husband, Galen moved in to take care of the children. No one ever told the children what happened to their mother.
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Knowing Henrietta's family did not receive any compensation for them using her cells, this for some reason brought me some feelings of consolation:
"When the NFIP heard the news that HeLa was susceptible to poliovirus and could grow in large quantities for little money, it immediately contracted William Scherer to oversee development of HeLa Distribution Center at the Tuskegee Institute, one of the most prestigious black universities in the country. The NFIP chose the Tuskegee Institute for the project because of Charles Bynum, director of "Negro Activities" for the foundation. Bynum__ a science teacher and civil rights activist who was the first black foundation executive in the country__wanted the center to be located at Tuskegee because it would provide hundreds of thousands of dollars in funding, many jobs, and training opportunities for you black scientists.
UNIT AT TUSKEGEE HELPS POLIO FIGHT
Corps of Negro Scientists Has Key Role n
Evaluating of Dr. Salk's Vaccine
HELA CELLS ARE GROWN
In a world of racism so strong in the 1950's and 60's, imagine the fact that a black woman's cells were being used to save lives of millions of Americans, most of them white. I can't help but pose this question out of curiosity,
Do you suppose any white person would have refused treatment, had they known the cure was coming from using a black woman's cells? Today of course not, in 1950's I wonder???
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Because of a mistake by one of the scientists, an important discovery concerning DNA was made.. A chemical mistakenly poured over the HELA cells caused the DNA's chromosomes to swell which showed that there were only 46 chromosomes not the 48 that were taught. This was a leap forward in the science world. And three scientists were awarded the Nobel Peace Prize in Medicine & Science in 1962 for their work on DNA and RNA.
And Ella, you can now add the links that I sent to you!😋💕😋
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I don't know, Bell, whether they would or not. Hard to imagine someone turning away from a cure no matter where it came from.
I read Chapter 15 but am not happy about it and I doubt Henriette would be.
And the next chapter is downright depressing!
What did all of you think of chapter 15 and 16.
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What happened to my links?😋
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That's an interesting question, Bellamarie. I have no idea, does anyone else? Blood donations were still segregated when Henrietta died. Of course, black cells were crucial to the screening and evaluation of the vaccine, but the vaccine itself didn't contain them, and had had no contact with them. That's a pretty subtle point to get across to overcome a prejudice, though.
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I don't think that the people giving the shots would've even known about H's cells being used. But I could be wrong as I have been wrong before!😋 It's worth a Google!
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Here are Annie's links:
https://en.m.wikipedia.org/wiki/DNA (https://en.m.wikipedia.org/wiki/DNA)
http://www.nobelprize.org/nobel_prizes/medicine/laureates/1962/ (http://www.nobelprize.org/nobel_prizes/medicine/laureates/1962/)
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Ella I am not up to chapters 15 & 16 yet.
My best friend's daughter just died at the age of 44 yr. old from diabetes. She had a stroke back in May, was battling to recover and was seeming to be doing okay, her Mom (my friend Barb) had just left her last Monday night, Tuesday at Bible study I asked how Chris was doing and Barb said okay she is just tired of being sick. Wednesday Barb tried calling her, there was no answer, so she called the neighbor to go check on Chris, and the neighbor found her in a coma. She was rushed to the hospital and put on life support. They did an mri and they said there was no brain function. At the request of the living will they had to remove her from life support and the funeral will be this Saturday. I know diabetes is manageable, and I wonder if Henrietta's cells helped in any way with diabetes.
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Oh, dear, how sad. I don't think HeLa calls were involved in the improved treatment of diabetes, but I'll try to check.
15 & 16 have a lot of emotionally strong stuff, not good for someone grieving. Either take a break, or read some of the science chapters.
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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
| (http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
|
http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/
Part One: LIFE Oct. 1-8
Part Two: DEATH Oct 9-?
How did the Nuremberg Code gets its name?
How is the Code policed?
Living wills - do they work all the time? What experience have you had with them?
What were the two new things learned about cells growing in culture?
What was the CCCC? And later the ATCC? What were their missions and how did HELA become part of it?
Genetics, what a fascinating history! How did HELA help scientists in the study of genetics?
Do you think it is necesary to the book to put in chapters such as 19 which spells out all the troubles the Lacks family had?
Discussion Leaders: Ella, Adoannie, PatH
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PatH, thanks for putting up my links. I am just amazed by
all the unknown to me information that is in this book!
Bella, am so sorry to hear about your friend's daughter.
Like you, I wonder if The HELA cells were ever used to improve her life.
🙏🙏 for you all.
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Thanks PatH., for the heads up on ch 15 & 16. I may do as you suggest and not read them at this time. Thank you Annie, I suspect the next few days will be difficult to get through.
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Bella, so sorry about your friend. It's hard to take at any time, but especially with one so young. Hugs!
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There are plenty of science chapters if you choose to read them. In this section they are:
13. the autopsy, Tuskeegee facility, cell culture takes off
14. the name leaks out a bit
17. unethical experiments, ethics standards put in place
18. cell culture expands rapidly but sloppily, cell fusion
20. massive cell contamination crisis
22. Guy, Hen's cancer reclassified, her name becomes common knowledge
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Chapter 17 is interesting, have you read it? This fellow named Southam, chief of virology at Sloan-Kettering, did some experiments with HELA, some on cancer patients, and then on people without cancer and where did he find those? At Ohio State Penitentiary. Volunteers! And later he started injections on his regular patients.
How would you like to be one of those? He didn't explain to his patients that they were injections of cancerous cells because he didn't want to scare them.
Do you remember what stopped that practice?
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There are so many interesting and important medical issues in this book. That was a big one; the cancer cell injections caused an uproar that ended with a set of rules for getting informed consent from patients, and stricter ethics.
We all grew up with doctors who didn't believe in telling patients much, or making them part of the decision process. This book reminds me of just how different things were. I remember my frustration as a child and teenager trying to get more information from doctors. "What's this medicine for?" "For what ails you."
To be fair, she did share much important information with us.
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I have a question for everyone: where are you in the book? There's a lot of good stuff in this section, and I don't want to be out of step with you.
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You are so right, Pat about doctors keeping us uninformed. I always thought it was because they were too busy to take the time or they didn't feel the need to inform (superiority). THEY KNEW! Who are we to question?
We have learned somewhat, don't you think? I once had a doctor who opened his PDR huge book and had me read about an injection he was giving me. (The early cortisone) The doctor later died an early death because of high blood pressure and I wondered why he could not keep that under control.
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I agree Pat, lots of good stuff. I've been trying to put questions in the heading and am having problems. I'll get it worked out.
They concern Chapters 17 and 18. FASCINATING!
We have questioned ourselves about the "cancer" in the HELA cell. Now we are getting to the answers.
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So let's begin with Chapter 17. What did you learn or what interested you the most in this chapter?
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I decided to not skip the chapters so I am into ch 16.
PatH., you are so right about so many issues in this book, not only ethical but legal. This really made me angry when I read this:
pg. 103 -104 Since the launch of the HeLa production factory at Tuskegee, Gey had been writing a steady stream of letters to other scientists, trying to restrict the way they used Henrietta's cells. At one point he wrote his longtime friend and colleague Charles Pomerat, lamenting the fact that others, including some of Pomerat's lab, were using HeLa for research Gey was "most capable" of doing himself, and in some cases already done, but not yet published. Pomerat replied:
With regard to your...disapproval for a wide exploration of the HeLa strain, I don't see how you can hope to inhibit progress in this direction since you released the strain so widely that it now can be purchased commercially. This is a little bit like requesting people not to work on the golden hamster!...I realize that it is the goodness of your heart that made available the HeLa cell and therefore why you now find that every body want to get into the act.
Gey does not want Henrietta's name to get out in articles, he says because of the privacy of the family, but in fact his biggest concern is that the family would learn they used her cells without hers or their permission. So Gey created the pseudonym to throw journalists off the trail of Henrietta's real identity. And because of that her family had no idea her cells were alive. pg. 109
This entire chapter made me a bit upset, and wondered how Gey thought he could actually keep the family name hidden forever and keep these cells from getting into mass production. Sorta like trying to put the Genie back into the bottle, once she has escaped.
Thank you Maryz for you kind words. I will be going to the funeral home later today. Expect it will be extremely difficult to see my best friends in so much pain.
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BELLAMARIE: so sorry for your friend's loss. We are all with you.
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Seems to me any new creation loses its purity to the original - and I also think creations are not entirely understood even during experimentation -
I'm thinking the atom bomb - no matter what the scientists concerns, even they had no idea of the radiation damage that would cause cancer - I remember seeing the movie clips of dignitaries and service personal within a few miles of an atom blast. The soldiers in fox holes and the dignitaries only a few miles back sitting as spectators and the ONLY protection any of them had were dark glasses - no one had any idea they were all going to have a slow death with cancer being the culprit.
And for taking an idea or 'germ' of an idea and sharing it, you do loose all control - my grandson is going through that now - instead of hiring help he partnered with someone to produce a video game who of course could not see into my grandson's imagination exactly as my grandson saw the outcome of this game and grandson was not prepared for a collaborative outcome but that is all that is left because if either let go and it makes money the lawyers get most of it.
To think beforehand while the thrill of awareness and working on something so new takes over our whole being does not seem to pair with dotting every i and crossing every t - I can see how the excitement of discovery was chased so that only after the fact was the realization that permission was not sought. If someone lives their life with integrity this would bother them. They would not want the world to know they allowed their emotions to get the better of them and then, to think others were benefiting from your carelessness - ouch ouch - He was probably a good man who was not out to harm but, the excitement of what he was finding and learning was greater than the pragmatic mindset needed to protect the family and his reputation.
The creative geniuses of our world have a difficult balancing act. I'm thinking now of de Vinci who dissected corpses and paid grave diggers for a human corpse which both were against the law. It is like for some, their curiosity and need to learn takes over and following community values is beyond their conscious mind - not even pushed back - simply gone, vanishes into the ether till, something or someone says or does something that brings them back.
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Barbara, didn't Michelangelo do the same thing? For gaining more knowledge of how the muscles were attached plus other body information for when formed his sculptures?
Like you, I think Gey was just so thrilled and wanted to share his new accomplishment with every
one else who had been trying to have cells live and reproduce that he just didn't think when he shared them.
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PatH, an I understanding this correctly that because the rules aren't laws, many scientists ignore them? It's as if they thought they were just suggestions.
The virologist, Southam, certainly frightened me. Do these experiments still go on today? There is an interesting little clip in the AARP Bulletin about drinking very hot beverages. The World Health Organization has warned that anything above 149 degrees may possibly cause esophageal cancer. Pg 34.
On Pg 36, an article about HPV(human papillomavirus). This is the same virus that causes cervical cancer. So we are getting somewhere with diagnoses. An oncologist at the Ohio State University in Columbus, OH was one of the first researchers to suspect that HPV was causing these cancers.
It's just amazing to me; how far we have come! I wonder if these researchers are using HELA cells to conduct their studies? National Geographic devoted one their issues to DNA! Fascinating yet scary stuff is going on.
So back to the book! And the stories about where and how the HELA cells were being used on patients without their informed consent. But where does a doctor or researcher start when explaining what they are doing?
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So many ethical issues. Annie, I don't know much about the legal force of the rules, but I doubt many scientists ignore them.
Firstly, there is the force of opinion. Fellow scientists would ostracize them, and many journals wouldn't publish work that was done like that. Secondly, there is the force of funding. NIH, which funds a huge amount of medical research, has very strict guidelines; you can't get a grant without explaining how you are going to handle informed consent, and they check up on you, and can take away your funding if you don't comply. Universities and other government agencies also have ethical guidelines which they enforce.
Southam was a piece of work, wasn't he? It's perfectly obvious from the quotes that he didn't altogether believe his own justifications. For example, he says there is no risk, but he doesn't inject himself because "there are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk." In other words, he admits there is some risk, but he is a more important person than his subjects.
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INFORMED CONSENT. A huge subject. I think we can all undersand how important this is in medical science if we read Page 131 or Chapter 17. We all know about the Naziis and the terrible research they performed on human subjects. On August 10, 1947 seven Nazi doctors were hanged for their crimes. From this trial came the NUREMBERG CODE - a code which was to govern all human experimentation worldwide. It is still being used everywhere, you can read it online.
But the Code is NOT THE LAW. It is recommendations. Chapter 17 spells out the differences, how it is enforced, how it is treated in the courts, etc. An interesting chapter.
My daughter had to get 36 "informed consents" from pregnant women when she was getting her PH.D. even though she was just going to ask them to fill out a questionnaire. (as I remember it, but I think I'm right)
Any of you familiar with "informed consent?"
What of that Marin Saigo who woke up paralyzed after a routine surgery?
Do you question doctors thoroughly before a surgery? Can you ask for references?
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Ella Gibbons,
Do you question doctors thoroughly before a surgery? Can you ask for references?
Absolutely, Yes! When I was deciding to have my hysterectomy back fourteen years ago, I not only questioned my female doctor who would perform my surgery, but I also read many articles, and a book called "What Your Doctor May Not Tell You About Menopause" by Dr. John Lee. (He was a courageous pioneer who changed the face of medicine by introducing the concepts of natural progesterone, estrogen dominance and hormone balance to a large audience of women and men seeking answers to their hormone questions.)
http://www.virginiahopkinstestkits.com/aboutdrjohnlee.html
My sisters who had all gone through menopause before me who had taken synthetic HRT, were all telling me what to expect. I chose to use the natural progesterone cream Dr. John R. Lee recommended in his book, and when my female gynecologist expressed her concerns, I asked if she had read his book. She said she had not, but a few people had mentioned the book to her. I told her not only as a doctor, but for her being a female that will one day have to make this decision, it would be a good idea to read this book and do more research, before pushing the synthetic drugs. I had my hysterectomy and went through menopause without a hitch!!
"As long as drug companies are educating our doctors, we will be stuck in a dark age of medicine where profit rules and confusion reigns."
http://www.virginiahopkinstestkits.com/hysterectomyhormones.html
I also had a long list of questions when I met with my pre surgical nurse and asked who would be counting the surgical tools, cloths, etc., I told her I knew two friends who had surgery and a sponge was left in one and a tool was left in another. She said there would be one person assigned to just that, counting the items before, during and after surgery. When I woke up they assured me all items were accounted for. :) After my surgery a male partner gynecologist came into my room to do the follow up since my female doctor was not on call, he tried to push the synthetic HRT and I told him I had already discussed my plan with my female doctor. Talk about a man 6'4 about 220 lbs looking red in the face, he got a bit edgy with me and I thanked him and said I have it covered. I did my follow up check ups and annual pap smears with my female gyn and she was amazed at my results of recovery and lack of symptoms most post menopausal women had.
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I just finished Part Two and my heart just goes out to the Lacks family. This author sure had a way with communicating with them, earning their trust and getting them to open up to her. It sure opens our eyes to the fact that science is willing to trespass, by pass and intrude on humans lives for the sake of research and advancement. Learning how they would just take black people off the streets and use them as guinea pigs was deplorable. This is a sad thing to read:
pg. 168 Sitting in Lawrence's living room, Sonny and Bobbette yelled back and forth for nearly an hour about Hopkins snatching black people. Eventually, Sonny leaned back in his chair and said, "John Hopkins didn't give us information about anything. That was the bad part. Not the sad part, but the bad part, cause I don't know if they didn't give us information because they was making money out of it, or if they was just wanting to keep us in the dark about it. I think they made money out of it, cause they were selling her cells all over the world and shipping them for dollars." "Hopkins say they gave them cells away," Lawrence yelled, "but they made millions! It's not fair! She's the most important person in the world and her family living in poverty. If our mother so important to science, why can't we get health insurance?"
pg. 169 "Everybody knew black people were disappearing cause Hopkins was experimenting on them!" she yelled. "I believe a lot of it was true." "Probably so," Sonny said. "A lot might a been myth too. You never know. But one thing we do know, them cells about my mother ain't no myth." Day thumped his cane again. "You know what is a myth?" Bobbette snapped from the recliner. "Everybody always saying Henrietta Lacks donated those cells. She didn't donate nothing. They took them and didn't ask." She inhaled a deep breath to calm herself. "What really would upset Henrietta is the fact that Dr. Gey never told the family anything__we didn't know nothing about those cells and he didn't care. That just rubbed us the wrong way. I just kept asking everybody, "Why didn't they say anything to the family?" They knew how to contact us! If Dr. Gey wasn't dead, I think I would have killed him myself."
In my personal opinion which doesn't count to a hell a beans, there just is no justification for what John Hopkins and Dr. Gey did to this entire family. If asked and explained, I believe Henrietta Lacks would have gladly allowed them to have her tissue for research to save others.
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Annie, in answer to your question, in a quick search I couldn't find any reference to HeLa cells being important to diabetes research. I also asked an NIH buddy who followed these things more closely than I, and he didn't know of anything.
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PatH., I think it was me who was wondering about the HeLa cells helping diabetes. Thank you for taking the time to try to find the answer. It seems a mystery as to why Chris' count was at twenty when she entered the er in a diabetic coma. It was not as if she was not taking her daily counts, and medication. A mystery that will most likely not be answered.
JoanK., Thank you for your thoughts. The funeral was on Saturday. It was difficult to watch a mother and father go through losing their brilliant, beautiful young daughter, but they are a very faith filled family, so know they will draw their strength from their faith.
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There's a lot to get indignant about in this book. The overall treatment of patients, especially Blacks, seems awful to us now.
What about Dr. Gey? How much did he do wrong? I don't blame him for not making sure Henrietta was asked for her cells, or telling her right away that he was using them. He was working with the hospital rules, and her sample was one of many that were given him by the doctors treating cancer. He had no way of knowing for a long time that they would be important. But surely when it became obvious how very important they were, he should then have told the family. Anyone would have been happy to know that someone they loved had done something so important.
The business of getting mad at other people using his cells after he had freely distributed them is actually very funny once you notice what's really going on. He isn't mad because others used the cells, he's mad because he got scooped.
Gey was awful about writing up his work for publication; eventually, Margaret started writing it up for him. This is a common problem with scientists. The writing is picky and time-consuming, and often leads to the need to do a few minor experiments to tie up loose ends, when they could be doing this interesting new thing they thought of. Plus some scientists don't have good writing skills.
Gey had done a lot of research he hadn't published yet, and some other scientists did similar experiments and published them first, so Gey didn't get credit.
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Bellamarie, that is sad and painful. I'm glad her family has strong faith.
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PatH., I agree with you on all counts about Dr. Gey. I think some scientists are so busy with their work the last thing they want to do is write about it, even though it is a must for the obvious reasons.
It sure would be nice to chat with this author and hear how she felt sitting with the Lacks family. I wonder if she did anything in a financial way to help the Lacks once her book came out? I am so drawn to them, and how much help they needed and nothing was given to them, yet others made billions of dollars from Henrietta's cells. I know that these cells most important part was in saving lives, but gosh what would it hurt to help this family in poverty and suffering with illnesses of their own. Just my human side wishing more could have been done for the family.
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I totally agree. Of course, in a perfect world, all families would get health care and help with their problems, but it seems very lopsided that a family that produced so much benefit for mankind couldn't reap even a tiny bit for themselves.
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Yes, Bella, the author felt the same way you do and so she set up a trust so Henrietta's grandchildren could go to college. I believe the money was from the author's profit made from this book.
Our weekend was a circus here in downtown Gahanna! After helping to move a 6 ft high robot into our van, my DH discovered he couldn't move his left leg. Called 911 and EMT's got him to the ER promptly at 9:30 Saturday night, where the docs could not find anything wrong with him but advised his PC to have a spinal CT done later this week! And they sent him home at 2:30pm on Sunday. In the middle of the rush, my DIL and I discovered (at 1am on Sunday) that we had locked the house so well that we had left all the house keys plus the garage door opener, inside the house. We had to wait until morning to call a locksmith to get in! (2 hours and $100 later).
So my DH came about 3:30pm yesterday using a walker but feeling just fine! Today he is up and doing quite well! Me? I'm sitting on my screened in porch resting my body and mind!😋😋💕💕😋
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What a weekend! I've developed a protective reflex of checking for my keys before closing the door, but it's bound to slip someday.
6 foot high robot?
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Which of the two stories, scientific developments and the Lacks family, do you find more interesting? Why? What are some important points in each story?
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Yes, he is 6 feet high but can be broken into 4 separate pieces so we can get him in our van. He has been lots of places, like the Dr Who 50th Convention in 2014 in Atlanta! Saturday night he was at the high school marching band Halloween party in a local park. Our youngest grandson asked to take him. Said they had a blast! I will attempt to put a pic of him here but if I fail, I will email a pic to you!
Expect a picture or even two!😢💕😢 by email! Let me know if they arrive!
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i liked both stories as I learned quite a lot of history from both of them.
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Annie, Your 6 ft robot sounds interesting. I am giggling just imagining trying to break him down and travel with him.
PatH., Because I am drawn more to the humanistic side of stories, I enjoyed reading about the Lacks family. I could actually get a feel of sitting in the living room with all of them, and the author. She wrote it so descriptive that I could actually picture the house, the kitchen, the burnt pork chop, and the family members shouting back and forth to Rebecca, and each other. She humanized them and made them real people with real feelings and concerns. The scientific developments were interesting, but upset me a bit.
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Bell finds the "family' more interesting than the scientific experiments. What do the rest of you think?
I would love a teacher (or the author) to be with us, a blackboard set up, a few petri dishes to put cell culture in and I WANT IT ALL EXPLAINED. I like the science of it, but when I read it and then came back day later it is gone from my memory.
One thing I do remember that astounds me is that all cells growing in culture eventually die or they become cancerous. You can't gat away from cancer, it sneaks up in all kinds of ways and cancer cells grow more rapidly than others..
There is so much more here to learn - Chapter 18 is full of different experiments. I doubt the "family" would want to hear of some of them, such as fusing HELA cells with mouse cells and with chicken cells. And they discovered "cell sex." Read if for yourself (pg.141)
I would like to have been a scientist I think and learn new things constantly about he human body; although I know the work is tedious and years and years of experimentation may make no new results
Still, think of the hope!
Bell, I agree the family should have been somehow noted, but at the time the scientists didn't think anything of it, they were using their own bodies, families and friends, tissues for experimentation also
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PAT, would you explain in simple terms the HELA BOMB, PLEASE.
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I'm not aware the scientists were using their friends, family and own bodies for experimentation. I think if I remember correctly without going back, that only Dr. Gey after being diagnosed wanted to use his own tissue for research. They were pulling blacks off the streets and using black prisoners. I personally feel they thought, the end justifies the means.
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Page 139: In recent years, using tissue samples from themselves, their families, and their patients, scientists had grown cells of all kinds---------..............
Where is everyone in the book? I'm on Chapter 20, the Hela Bomb. Am I going too fast, too slow?
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Scientists often experiment on themselves in minor ways, and here we see instances of them using tissue samples from themselves or family members. I'm too short of time to track them down, but one very amusing example is Leonard Hayflick. His cell culture had been grown from bits of the amniotic sac taken from his newborn daughter, and when he learned the cultured cells contained a genetic marker found only in Blacks, he called his wife to be reassured that he really was the father.
However, at least in this book, we don't see any scientists except the dying Gey doing risky experiments on themselves.
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Thank you Ella for refreshing my memory. I was referring specifically to the time in the early 1950's when Henrietta's tissue was used without her or her family's position. By the 1960s they had begun using tissue samples from themselves, their families, and their patients,
It did not specify, but I am hoping they were now informing these people and getting their permission. But nothing would surprise me after reading what they were doing in the 50s.
PatH., That was kind of funny reading about Hayflick thinking because there was a genetic marker only blacks had, found in his daughter's cells, he assume she was not his child.
In the next paragraph it was troubling to read: "Despite the importance of this research, many scientists seemed cavalier about their cultures. Few kept clear records of which cells grew from which donors, and many mislabeled their cultures, if they labeled them at all. For scientists doing research that wasn't cell-specific, like investigating the effects of radiation on DNA, not knowing what kind of cell they were working on might not affect the outcome of their research. But if cells were contaminated or mislabeled in research that was cell-specific__as much research was__ the results would be worthless. Regardless, the culturists who called the meeting said, precision was essential in science, and researchers should know what cells they were using, and whether they were contaminated."
This was not only causing contamination, but costing millions of wasted dollars in research and time.
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The HeLa bomb: this really was a bombshell, and there were two issues concerning the cause (contamination, and the incredible vigor of HeLa cells), and one concerning the implications (a whole lot of experiments turned out to be worthless).
Contamination: people were still learning the best ways to grow cells, and they were still discovering all the picky precautions needed to keep contaminants out. Think of it as trying to keep tiny dust motes out of something. You remove some of your sample with a hypodermic needle, and when you pull the needle out a tiny bit of the solution goes into the air as an aerosol. You get a minute drop on your lab coat. It dries, floats off, and lands on your lab bench. You put a clean pipette down on the supposedly clean bench, pick it up, and use it to transfer your cells, not realizing you've added a call. Now people take incredible precautions against contamination, using elaborate sterile hoods--kind of big boxes in which you do your experiments, with air flow systems using filtered air, and a whole bunch of very picky techniques to keep things clean.
The vigor of HeLa cells: these cells grow so much more vigorously than normal cells that a single one can take over a culture, eventually displacing the normal cells. A normal cell landing in your culture might die, but a HeLa cell won't. So contamination is almost certain to occur eventually.
The implications: if you were doing a general experiment, where the kind of cell didn't matter, your experiment would still be good. But if you were trying to find out what liver cells did, and you really had HeLa cells, everything you thought you had learned didn't tell you a thing about liver cells. And if you thought you were seeing normal cells turn cancerous, what you really saw was normal cells being replaced by HeLa cells.
So a whole lot of people weren't working on what they thought they were, and their experiments were no good. Some people lost years of work. I can remember the horror that spread through the biomedical research community when the news broke.
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Bellamarie, you posted while I was writing, and said much the same thing.
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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
| (http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
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http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/
Part One: LIFE Oct. 1-8
Part Two: DEATH Oct 9-21
Part Three: IMMORTALITY
Chapters 23-31 Oct 22-?
Chapters31-38
Discussion Leaders: Ella, Adoannie, PatH
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What is G6PD-A, and why does it matter? The only important thing for this story, is that it's an easily measured genetic maker which occurs only in Blacks, and is rare, even among them. So once you see it in all your cell cultures, your problem is obvious.
G6PD is an enzyme important in cell metabolism, especially in red blood cells. There are several variations in humans. Some of these are harmful, leading to aplastic anemia, but there are also some variations that don't matter--they all work well--and G6pD-A is one of them. It doesn't matter to you which one you have, any more than it matters what blood type you are.
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Remember all the movies - I do - they were B movies of 'mad' scientists or some were melodramatic stories of scientist using their own bodies to try out various experiments - there would be the caring nurse, who had usually more on her mind than just caring, trying to get them to stop before they would be too ill or had gone mad - or there would be fellow scientists talking him up as a hero for doing what they were not willing to do -
Interesting how they were always scientists and not doctors - I guess because to most people even into the late 1940s science was a suspect discipline and not to be taken seriously - sort of a Frankenstein result was the way folks thought of any science - now of course we can laugh at ourselves where as then, we laughed at the idea of taking scientists seriously and after we heard of the atom bomb scientiests were still not revered but no more slap stick comedy about the profession. By then they were mentioned with awe in our voices.
It was never the doctors who were dismissed as crack pots or engaged in dangerous things but then we depended upon Doctors for what they could do and saw them with their little black bag and stethoscope not as someone in a white coat behind a table filled with glass tubes and dishes trying out experiments.
I'm thinking back, as a kid and I do not think anyone questioned anyone who had a collage degree - but then we forget - until the GI bill allowed hundreds of thousands of returning WWII vets to attend collage only about 5% of this nation had a collage degree - did you know today according to the U.S census about 43.8 percent of African immigrants achieved the most college degrees, compared to 42.5 percent of Asian-Americans, 28.9 percent for immigrants from Europe, Russia and Canada and 23.1 percent of the U.S. population as a whole.
All to say there was some sort of unspoken and maybe unknowing privilege we gave to anyone who attained higher education so that I can see how those working with the cells never thought to ask and how at the time Henrietta or her family never imagined asking or had any concept of the wealth that would be created by others from the cells. Where as today there is more common knowledge among all of us with the increase in education in this country and so our sensibilities have changed.
Saw the documentary about Nikola Tesla last night and he too was not interested in money as he was developing what he imagined. He was so driven to find answers he ended up having a nervous breakdown. My take is the wealth that was the outcome of Henrietta's cells was not even a speck of dust in the eyes of those who were first seeing and using these cells - I bet the wealth caught them by surprise and the profits grew like they did for Tesla who was ignorant of business, appearing cavalier with a contract he had with GE giving them more of the profits. Tesla had no legal or ethical advisors where as these doctors and scientists would be called to task by their own regulations. And the resulting profitable Business - the only regulations there is what the Federal Government could negotiate. Hind sight, once the genie is out there is no stuffing it back. Today it has gone so far the other way - seems folks will not do anything without receiving compensation.
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Thank you PatH., it puts it all into perspective. It had to be reassuring to Hayflick to have the explanation of the culture being contaminated with the HeLa cells, after his wife confirming to him it was his daughter.
Barb, you are so on point in mentioning back then the money was not of their thought and priority at the time they used Henrietta's tissue . It did indeed become it in the not so distant future, as it always does seem to.
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Sorry not to be commenting much but my DH has some kind of virus which has kept both of us up the last two nights plus we have been watching all the baseball games. Buuuut! I have truly enjoyed all the posts.
BARB, loved your comparisons of Tesla and the scientists in the book. Yes, money really didn't count much in the beginning. It was the huge number of experiments that could done because of the huge number of HELA cells being reproduced or produced??.
About our knowing more in today's world than they knew back then. You should read the article in National Geographics about what science is doing with DNA. It's called CRISP and I bet if we Googled it we could just read about right here.😄😄
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(http://i239.photobucket.com/albums/ff125/PatriciaFHighet/Dalek.jpg) (http://s239.photobucket.com/user/PatriciaFHighet/media/Dalek.jpg.html)
Here is Annie's 6 foot robot. Her grandson is inside, talking to his grandfather.
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A Dalek - Love it - what fun -
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Yes, he has been a big part of our lives for the last three or four years! We break him down into four pieces, load him into our van and take him anywhere someone wants to show him. Did I mention that he went to the Dr Who 50th Anniversary Convention in Atlanta in 2013, or was that 2014? Well, lots of pics were taken and up on the internet! He was the hit of the ball! Hmmm, my memory is getting spacey! 😀😀😄
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PatH, I just sent you a link to the DNA article in National Geographic asking you to post it here for those who are interested. And it's being tested by something called CRISPR and that's explained in the article.
If you read it, keep scrolling as there are pictures too plus a long story and more links to what it could mean! ENJOY!!!😋
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Here it is: will read it when I get back.
http://www.nationalgeographic.com/magazine/2016/08/dna-crispr-gene-editing-science-ethics/ (http://www.nationalgeographic.com/magazine/2016/08/dna-crispr-gene-editing-science-ethics/)
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Our entire body is bits and parts - for a while in a design class - would you believe an art design class at SCAD my grandson was working with the House of Yves Saint Laurent designing body parts - they see a future in designing and manufacturing attractive body parts - starting with artificial limbs.
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Annie, Thank you for sharing a pic of your robot. I would never have imagined it looking like that, a mix between Darth Vadar and R2D2.
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;D :D :) It is a Dalek from Dr. Who, the series on PBS - been on PBS every year since 1963 with many Famous British actors playing the part of Dr. Who -
(https://cdn.instructables.com/FZZ/WFYZ/IDFSER9D/FZZWFYZIDFSER9D.MEDIUM.jpg)
Which of the actors was your favorite - I liked Christopher Eccleston - I thought he was a little bit in love with Rose which of course couldn't happen but he was tender and at times he appeared to be smitten with her. I did not start to watch till the early 80s when Peter Davison played the Doctor which was fun since he still looked so much like Tristan Farnon- I do not think he had the Daleks while he played the Doctor.
These are the actors who played the Doctor - which of them was your favorite Doctor Who.
William Hartnell (1963–66)
Patrick Troughton (1966–69)
Jon Pertwee (1970–74)
Tom Baker (1974–81)
Peter Davison (1982–84)
Colin Baker (1984–86)
Sylvester McCoy (1987–89)
Paul McGann (1996)
Christopher Eccleston (2005)
David Tennant (2005–10)
Matt Smith (2010–13)
Peter Capaldi (2014–present)
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Found these
(http://2.bp.blogspot.com/-zAIisq-3Ah8/UN-Zqx3i79I/AAAAAAAACuA/7zNTQjNzZB4/s640/hela+1.jpg)
And this - Henrietta was a pretty lady.
(http://thumbs.media.smithsonianmag.com//filer/Henrietta-David-Lacks-1945-631.jpg__1072x720_q85_crop.jpg)
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BARBARA, couldn't resist answering your question! 😊😊
Tom Baker and Matt Smith
Don't you love that headstone!!! They wrote Henrietta's whole story on it!
BELLA, I read somewhere that the two robots' (R2D2 and 3CPO, from Stars Wars) were actually based on the Dalek!
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Fun stuff to look at, but let's get back to the book. I read that the scientists using tissue samples have made some historic discoveries, cigarettes cause lung cancer, and that normal cells die but cancerous cells don't. etc., etc.,(pg.139)
I've missed something I think. Why is it that cancerous cells don't die? Is that why Henrietta's cells kept living and growing. What is different about her cells than other cancerous cells?
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Ella I think we tackled this question earlier and it was a bit of a phenomenon. The Lacks family being a faith filled family, credit it to God wanting to give the world a way to cure diseases through their mother's cells.
Why didn’t Henrietta’s cells die like all the other cells before them?
That’s still a bit of a mystery. Scientists know that Henrietta’s cervical cancer was caused by HPV, and her cells have multiple copies of the HPV genome in them, so some researchers wonder if the multiple copies of HPV combined with something in Henrietta’s DNA caused her cells to grow the way they did. Henrietta also had syphilis, which can suppress the immune system and cause cancer cells to grow more aggressively. But many people had HPV and syphilis (particularly in the ’50s) and their cells didn’t grow like Henrietta’s. I’ve talked to countless scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when others didn’t. Today there are other immortal cell lines, and it’s possible for scientists to immortalize cells by exposing them to certain viruses or chemicals; but there still hasn’t been another cell line like HeLa, which grows in a very unique way.
http://rebeccaskloot.com/wp-content/uploads/2011/03/HenriettaLacks_RGG_convo.pdf
WOW! Barb, what a great find. Henrietta sure was a very beautiful woman inside and out.
Annie, Interesting about the two robots being Dalek! I know nothing about robots.
Are we ready to move on to Part 3 of the book?
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Bellamarie:
Are we ready to move on to Part 3 of the book?
I think so. Let's divide it in two. I'll figure out exactly where shortly, but roughly 50-50.
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Okay, thanks PatH.
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Ella:
Why is it that cancerous cells don't die?
A big factor is something called telomerase. When cells divide, the ends of the chromosomes tend to get damaged or stick to each other. They are protected from this damage by having something called telomeres on the ends. These are neutral bits, that aren't needed genetically, and serve as protection. Any damage happens to the otherwise unneeded telomeres. Eventually, all the telomeres are used up, the chromosome is damaged, and the cell dies.
Embryo cells are doing a lot of dividing, and they have something called telomerase, that can add more telomeres back on, allowing the cells to divide more times. As a person grows to adulthood, the telomerase is turned off where it isn't needed, remaining active in some cells that still divide a lot, like skin cells.
It's not turned off, or is turned back on, in cancer cells, and this is why they can keep on dividing.
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The possible cancer drug heavenseden mentioned some while back works by interfering with the telomerase in cancer cells.
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PatH, my daughter read this book earlier and this morning when she called me from her home in Ithaca,NY, she explained the telemorese to me and the junk DNA and how it works in our bodies. She is going to read that article that you put up the link, while she' s on vacation next week. 😋😋
I will be reading part 3 over this weekend! Well, the first half! 😊😊
Ella, this one of the best books we have discussed in a long time! With Pat's on point scientific helpful explanations using simple language that we can understand, I am truly enjoying it. Wish our lurkers would speak up!
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Annie, I agree I am enjoying this book too. It reminds me of reading the book on the ebola virus. Very informative.
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It's a remarkable book in that the author does an equally good job on the scientific part and the human story. And in this next section we learn just what Skloot was getting into when she tried to get the personal side. We see the events that made the Lacks family so unwilling to talk, how poorly they were served by anyone they had to deal with, how little information they were given, and how poorly equipped they were to understand it in the technical way it was given, the emotional devastation that some of them felt from what happened to them.
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As you all know, Ella asked PatH and me to continue the discussion if she got weak. Well, with her falls, she has gotten weaker and PatH and I will be here to discuss the rest of the book. Please keep Ella in your good thoughts and prayers. 🙏💕🙏
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Ella did the hardest part--picking the book. She has a sense I don't for seeing what books will be great for discussion.
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these are the times when I wish we lived closer to each other - so much love in my heart for Ella - and so many great books Ella has arranged for us to read - her choices never disappoint and she gives so much care to a discussion, rallying everyone to share their thoughts. Thanks Pat and Annie for continuing her work - as usual the books Ella brought to us had far more than the story of who did what, when.
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Ella has a whole lot of prayers winging their way to her from all of us. Hang in there, Ella.
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One thing that stands out in this section is how poorly the Lacks clan was served by the medical profession, both in their ordinary lives, and in their interactions with the professionals studying Henrietta's cells. Notice the many ways they were shortchanged. How different would this have been if they had been white and middle class? How different would it be now?
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Good question, PatH, and one that I think we here might want to discuss. When you read the book and know that the Lacks family were undereducated and very poor and Black, one almost has to assume that if they had been white, they would have been listened to and cared about much more than they were. I believe that the writer paid more attention to them and even helped them try to understand the HeLa cells and their mother's contribution to our society. I am not very far into our assigned reading as I am really trying to learn just what all this means.
Think of poor Deborah back then trying to figure out why her mother's cells were so important to the world. And her studying about the cells and writing a journal on what she thought of how her mother might have been treated, did she know about her cells had celebrity status before she died? I seem to remember Mary Kusick saying that Dr Gey went to Henrietta's bedside and whispered in her ear about the wonderful discoveries science could make, using her cells.
I am rereading the book as I go and discovering many stories that I'd forgotten. All the legal happenings and the suing of some of the drs really makes one think and wonder if any of one's own cells have been used after surgery. But, I would have been informed and asked what I did or didn't want science to do with my cells. You are so right about NIH and its control of all that it permits to happen in our science
world. Are their rules now laws?
When I was a freshman in H.S., my Health and Safety teacher(a nun with a PHD in genetics) taught us about Mendel's peas, which fascinated me. She also was a baseball fanatic and let us listen to the World Series! ;D ;D When I was a sophomore, our teacher(a nun with a degree in biology) taught us about the theory of evolution. She wanted us to understand what it meant so we would be able to converse about it when we went to college.
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Just a thought - I'm thinking others would be given what we would consider more compassionate, humane and professional treatment and with that thought I realized, it would not be the average person but the so called elite. Looking at that, it quickly becomes apparent the upper middle class and wealthy did not get that way or stay in that category without 'smarts' so to speak - just knowing the right person will only go so far - Communication is based on a shared understanding, which is affected by education and exposure to decision making with the belief that things can happen because we can, not only figure it out but if someone figures it out we are capable of understanding. Those with more wealth, beyond money and what money can buy, enjoy a certain expectation of respect and the confidence that goes with the ability to understand new ideas.
I think today the reason we receive a different level of respect and therefore, treatment from our health care is we are more educated and have different expectations - we are not 100% totally dependent on those providing us with health care so that we follow without question anything and everything they say with no thought of personal research or asking for another opinion much less even asking questions.
I am remembering when we were first encouraged to ask questions of a Doctor and to have our list of questions - unheard of even during the early days of my marriage and birth of my first two children - living so far from family I had no idea what to expect - the only women prepared were those who lived near their family and the kitchen talk was Mom's and Aunts, not so much grandmothers who had all their babies at home.
On the Doctor's side - two things - a research doctor is not known for what has been called bedside manner - they do little explaining. Also, few professionals look at their 'smarts' both education and simply living in a different economic environment as making them unique or different and how they can relate more easily to others who may not share their profession but have what they assume is a natural ability to understand and ask questions. They are not so completely dependent, almost like puppets of doing exactly what they are told because they do not understand and do not have the education to understand or to ask questions.
Taking this beyond health care - say in the area of investing - you have to understand how interest works and feel confident that if you are investing money in anything you will understand the professional who can help - How many banks or stock exchange offices do you see in the community is not just because of available wealth in that community but also, because the people living there understand they can add to their wealth and they learn that before most are out of high school. They may not know the ins and outs of the Stock Market but they know it is an investment that can add to their wealth and they are smart enough to understand with guidance. That is not true in low income communities or communities with lower opportunities for education or generations of the kind of 'smarts' that allows you to be more than dependent on those who do have the 'smarts'.
The the huge issue of introducing smarts into a community has been tackled by many universities - this involved far more than accepting lower test scores in order to assure those with less opportunity are given a chance - it involved tons of special classes before and often during the first year to bring students to a level where they could even function in a collage class. The cost of these special classes as well as the lower tuition was absorbed by the collage.
There is more to the differences in various communities but rather than faulting the profession I think it is as if two cultures came together and the healing culture became aware after the fact that they could have handled things differently but to me I see it more as if 'in the fog of war' and so they reacted with no thought to put themselves in the shoes of the other, the patient much less even have a clue of what those shoes were like. The emotions, capabilities, lack of opportunity with limited smarts in relation to any professional thinking that those shoes held.
The only saving opportunity for the Lacks was for the family to become dependent on the law and then a new set of dependence but also, hindsight is great and today what happened is only understood by someone who has a sense of entitlement that comes with being born where the opportunity for higher education was expected so that injustice is seen that those without that viewpoint only know of dependence on any professional not as equal who will offer an equal exchange.
Going back to the time when Henrietta was being helped and looking at the differences in poor communities - part of what helped many an immigrant family is they settled where there were more opportunities for various work skills - not only was money available, and yes, they worked exceedingly hard with long hours, but the areas had many middle class and upper middle class to learn there was something to aim for, something to save for and urge your children to take hold in a better life. Where as swaths of the country did not have opportunity for advancement regardless race and so there is a different mindset.
I see the author seeing injustice where the opportunities for the Lacks family was limited by far more than their race. Even we as we read we are questioning how much of our own DNA or cells have been used and for the most part, we are a more educated group of readers - can you imagine those, without our understanding and education even thinking much less questioning such a premise?
Yes, Annie I think the nuns and the teaching priests get a bad rap - but all we can do is smile and go forward... In fact surprise to me I was a part of a group discussing the ministry as expressed in most churches as compared to the education a minister receives - shock to me the sharing among the protestant ministry that numbered about 20 - they all agreed that in order to graduate any Bible-focused, ministry prep college, the collage or university in order to receive that status was required by the state to teach science so that these minsters were taught the very science they chose to ignore when preaching to their congregations. Those ministers present took this issue into another set of meetings to explore the problem.
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PatH., those are very legitimate questions you ask. My heart just goes out to the Lacks family as I am reading this section. It's very difficult for me imagining how Henrietta's daughter was so very concerned that they were drawing the blood because they wanted to see if any of her children or husband carried the cancer. How awful it had to be just going there to let them draw the blood, then to wait and wait for the results which never came. Then to receive a phone call asking for yet more blood. She clearly had NO idea why they were taking their blood. The fact they weren't more clear and honest with this family just breaks my heart. It's difficult enough even in today's world for some people to speak up and ask questions to your doctor or anyone in the medical field, let alone being black, poor and uneducated back in those days. Gosh this book has at times depleted me emotionally and as you can see, I put it down and let it sink in and fade before reading more. How difficult it had to be for Rebecca the author to sit with this family and learn first hand, seeing their raw emotions as they told her their story about such injustices. I'll stop here and check back in tomorrow since I have to prepare for my CCD lesson for tonight.
Please let Ella know she is in my daily thoughts and prayers, and to get plenty of rest to recuperate. She is truly a gem to our discussion group and will be missed. Til her return, thank you Annie and PatH., for filling in for her.
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Bellamarie:
It's very difficult for me imagining how Henrietta's daughter was so very concerned that they were drawing the blood because they wanted to see if any of her children or husband carried the cancer. How awful it had to be just going there to let them draw the blood, then to wait and wait for the results which never came. Then to receive a phone call asking for yet more blood. She clearly had NO idea why they were taking their blood. The fact they weren't more clear and honest with this family just breaks my heart.
That seems to me to be one of the worst lapses. If they had paid any attention at all to her, they should have realized what she was thinking, and could have reassured her. I don't blame them for not bothering to tell her all about their research, but leaving her in suspense through a misunderstanding was plain wrong.
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Barb, here's an odd way the poor health care system limited the Lacks family. Most of the family had hearing problems, but none of them seem to have been treated, or given hearing aids until they were adults. This made it harder for them to learn in school, and more likely to drop out, and the less education they had, the fewer opportunities they had.
One person who gave teacher nuns credit was my husband. When he started college on the GI bill after WWII, a housing shortage at the University of Illinois meant that he had to take the first year at a local Catholic junior college. The rest of his life he was grateful to the formidable, fearsome old nun whose killer rhetoric class taught him how to express himself well in writing. He wasn't one of those scientists who don't write up their work because they can't write. (It's still a pain, though.)
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Yes, I remember that as a kid - not just hearing but eye sight as well - I remember when they finally had free eye examinations at the local firehouse and than later in schools - a tax dollar initiative - so again according to the kind of job opportunities in the area that allowed for a greater tax base the more services - I bet from the look of the cemetery that would have been an issue where the Lack family lived - It wasn't till my youngest was in grade school in the mid 60s that there were any free hearing tests offered usually in grade school - however, we had the kind of income that allowed for pediatric care from birth.
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I remember that, as a volunteer at my kids school, I was on the hearing test team (in the early '60's). When we moved to a new school district, eye check-ups were given also.
And both of my boys(at age 6) were referred for further tests at The Ohio State University. They had spots behind their eyeballs! Inherited from their dad!😋😋
Okay, back to our book! And the new laws imposed by NIH and more suggestions given to the
AMA that maybe they should require new Dr's to pay closer attention to the HIPA oath that they
took on becoming doctors!
Off to an appointment! Back later!
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Annie, I just finished chapter 26 Breach of Privacy, which was dealing with the new laws.
Gosh, it seems the Lacks family just could not catch a break, in being able to learn about things in the time frames that may have made a difference in them being able to sue Hopkins, or any of the doctors. I could barely get through reading the part where Deborah got her hands on the book Gold had written, and it not only detailed Henrietta's medical records, but the extent and graphic description of the autopsy. I can see how Deborah would fall apart, not be able to sleep, and cry endlessly. What a horrible nightmare it was for her.
Seems these doctors, scientists and writers all can remember everything, yet can't remember where they got Henrietta's medical records or her personal picture. This is deplorable how this family was violated. This last sentence seems like such a catastrophic injustice,
"And the dead have no right to privacy__even if part of them is still alive."
The next of kin or executor to her estate should have those rights, being either her husband Day, or her children.
Can we take a moment to let each other know where you are at in the book? I am beginning chapter 27 The Secret of Immortality.
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It's very helpful to know where you are. I read the whole book rather quickly before we started, since I knew I was going to co-lead, but the details fade. In re-reading, I'm through chapter 31, the last of the chunk we're on now.
This section has two notable inner journeys: Deborah's attempts to find out more about her mother, come to terms with the past, find some peace for herself and trust for others, and the author's efforts to win the trust of the Lacks clan, and become enough of a part of them to understand what happened to them over the years.
Let's notice how well each succeeds.
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Thanks PatH., I am now beginning chapter 31, so I will finish it and discuss up to this point.
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You did a lot tonight.
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The Book Club Online is the oldest book club on the Internet, begun in 1996, open to everyone. We offer cordial discussions of one book a month, 24/7 and enjoy the company of readers from all over the world. Everyone is welcome.
October Book Club Online
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
| (http://www.seniorlearn.org/bookclubs/immortallife/immortallife.jpg) | "There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late l940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her-a tumor that would leave her five children motherless and change the future of medicine." -Rebecca Skloot
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http://www.nytimes.com/2010/02/07/books/review/Margonelli-t.html?pagewanted=all&_r=0
http://www.biography.com/people/henrietta-lacks-21366671
http://www.lacksfamily.net/
Part One: LIFE Oct. 1-8
Part Two: DEATH Oct 9-21
Part Three: IMMORTALITY
Chapters 23-31 Oct 22-31
Chapters31-38, Afterward Nov 1-4
Discussion Leaders: Ella, Adoannie, PatH
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It appears women in Puerto Rico are having similar experiences of disrespect by the medical field as Henrietta
https://waragainstallpuertoricans.com/2016/08/30/puerto-ricans-are-being-used-as-medical-guinea-pigs-again/
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Barb, thanks for saving the heading for me. That's a disturbing article. I'd like to see the scientific part of the trial more fully described; there are inconsistencies that tell me I don't actually know what they really did. But whatever, it sounds like something they wouldn't dare do closer to home.
There is a crucial difference between this and the Lacks story. The Hopkins doctors treated the Lacks family badly, didn't tell them what was going on, never tried to get them compensation for the HeLa cells, etc.. BUT: they never did anything to harm Henrietta medically. She got the best treatment they knew how to give. The horrible things they did to her were the standard treatment at the time, and while they didn't save her, they were her only chance for a cure. They didn't do anything extra for their own purposes except take a tissue sample, which they did anyway for a biopsy. This wouldn't have been harmful--just like an oversize Pap smear.
It's crossing a big, big, unacceptable line to subject patients to harm for an experiment.
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An example of how doctors didn't take patients' observations seriously: when Henrietta went to Hopkins to be diagnosed, she told Dr. Jones there was "a lump on the neck of her womb". He wrote I do not quite know what she means by this, unless she actually palpated this area." Well, of course she had, but it didn't occur to Jones that a woman would be familiar enough with her own body to do that. And the lump was just where she said it was.
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It seems the Lacks family was beginning to trust people, accepting the invitation to attend the pg 219 -220 "conference of the official naming of Henrietta Lacks Day, she (Deborah) was ecstatic: finally, a scientist was honoring her mother. Soon the Lacks family__ Day, Sonny, Lawrence, Deborah, Bobbette, Zakariyya, and Deborah's grandson Davon__piled into an RV that Pattillo rented for them and drove to Atlanta, with the BBC film crew following behind."
pg. 220 "They gonna have a lot of doctors there talking on different subjects and different areas of the science field." she said, "And they're gonna hand out plaques to my brother and father and me in honor of our mother name. So I know it's gonna be a great occasion."
pg. 221 "It seemed like things were going better for the Lackses, like Henrietta would finally begin getting the recognition Deborah so hoped for.
I was excited for the Lacks family at this point, The Turner Station Heritage Committee was founded in Turner Station, Barbara Wyche wrote letters to Congress and the mayor's office demanding recognition of Henrietta's contribution to science, the Lacks visited the Smithsonian National Museum of American History where they had a flask of HeLa in storage not on display and Deborah even asked about cloning her mother back to life with the DNA cells and her own eggs. Tee shirts were being made up, pens, and a $7 million museum was being talked about, and a Henrietta Lacks Foundation bank account was opened, they began to collect as much money and information as they could for the museum. One of their first goals was getting a life-sized was Henrietta statue. July 4, 1997, Representative Robert Ehrlich Jr. spoke to Congress, "Mr. Speaker, I rise today to pay tribute to Henrietta Lacks."
Then it's all downhill from here....
pg. 223 "When she found out that the Speed and Wyche had started a foundation and bank account in her mother's name, Deborah was furious. "The family don't need no museum, and they definitely don't need no wax Henrietta," she said. "If anybody collecting money for anything, it should be Henrietta children collecting money for going to the doctor."
Sir Lord Keenan Kester Cofield the con artist, BBC hounding Deborah for more photos of Henrietta and asking about how she died, Hopkins pulled out of commemorating Henrietta, the Tuner Station foundation was getting piles of letter from the courts as was Deborah from the Cofield suit filed, and the only light at the end of the tunnel was, pg. 229 She also met with Kidwell, who told her not to worry and promised that Hopkins would fight Cofield.
Deborah pg. 230 began reading and rereading the full details of her mother's death in her medical records. And for the first time, she learned that her sister had been committed to a mental institution called Crownsville. Deborah called Crownsville for a copy of Elsie's records, but an administrator said most of Crownsville's documents from before 1955, the year Elsie died, had been destroyed. Deborah immediately suspected that Crownsville was hiding information about her sister, just as she still believed Hopkins was hiding information about Henrietta. Within hours of her call to Crownsville, Deborah became disoriented and had trouble breathing. Then she broke out in hives__red welts covering her face, neck, and body, even the soles of her fee. When she checked herself into a hospital saying, "Everything going on with my mother and sister is making my nerves break down," her doctor said her blood pressure was so high she'd nearly had a stroke.
I felt drained just reading these chapters.
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PatH., we were posting at the same time.
At the time I did not feel Henrietta's attending doctor did anything wrong other than misdiagnose her, and did not listen to what she was saying. A woman knows her body better than anyone else, no matter how much education doctors have gained.
The wrong and injustices that were done, was once the tissue was removed, they did not have her written consent to use it for science research. The autopsy was inhumane, and denied Henrietta the dignity and respect of her dead body. The entire medical/science hospital/ people, took advantage of a poor, black, uneducated family. Laws were not in place then, as they are now. For me... it does not take a law on the books to expect human decency, and to respect a person/body when they are alive or dead. As much as Henrietta's cells have improved the quality of life, and saved lives, they could have accomplished the same results without putting her and her family through the torture they did.
I think Wyche's letter to William Brody, then president of John Hopkins says it best:
pg. 224 "The [Lacks] family has suffered greatly...This family is, like so many others today, attempting to grapple with the many question and the moral and ethical issues that surround the "birth" of HeLa, and the "death" of Mrs. Lacks...The questions of (1) whether or not permission was received from the "donor" or her family for either the "use" of HeLa worldwide or the "mass"," and commercial, production, distribution, and marketing of Mrs. Lack's cells... (2) whether or not scientists, universities and government personnel and others have acted ethically in these two areas or in their interactions with the family... Other social issues also arise because Mrs. Lacks was an African American.
With all due respect to science, and admiration of the people who go into the research field, I have to admonish the lack of human feelings and respect they showed in Henrietta's case, and many others, in their quest to find cures. Makes me wonder if their accomplishments would be as fruitful, if they did indeed allow these factors to enter into the equation of their work. While I have NO doubt these people have great love of life, and are mothers, fathers, daughter, sons etc., they seemed to forget the people/bodies they are taking from for their research, are indeed someone else's family member. I, just like the Lacks family, will grapple with the moral and ethical issues, long after we finish this book.......
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Bellamarie:
Makes me wonder if their accomplishments would be as fruitful, if they did indeed allow these factors to enter into the equation of their work.
I'm guessing the accomplishments would be even more fruitful. People treating patients have to damp down their feelings somewhat, otherwise what they see tears them apart, and they can't cope. But that doesn't mean they have to abandon humanity. Anyone who ignores the humanity of others and themselves isn't thinking straight, and it's bound to impact what they do.
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The Hippocratic Oath is mentioned a lot. Mostly it isn't used any more; you'll see why if you read it. It's kind of out of date. Here's a link to the actual words. In the menu bar on the left, you can also get to a modern version, and the Nuremberg Code, and some other stuff.
http://guides.library.jhu.edu/c.php?g=202502&p=1335752 (http://guides.library.jhu.edu/c.php?g=202502&p=1335752)
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The chapter I have enjoyed the most is "All That's My Mother" which was so pleasing to read. Lots of good reporting by the author tells us about Christoph Lengauer and his pleasant way with Deborah and Zakariyya, showing them the HELA cells first in the storage freezers and Deborah and Zakariyya's amazement about the number of cells that they were staring at: his glee filled smile when Deborah talked of the HELA cell contamination that happened in Russia. He took the time to explain how the contamination problem happened. When he finished, he said,"Her cells caused millions of dollars in damage. Seems like a bit of poetic justice, doesn't it?" Deborah says her mother was just getting back at scientists for keepin all them secrets from the family! You don't mess with Henrietta--she'll sic HELA on your ass!" And everyone laughed, even I had to chuckle! Deborah was really loosening up and enjoying all the attention that Lengsuer is giving her and her brother. And then he grabs a tiny vial of HELA cells
and "held it out to Deborah, his eyes soft. She stood stunned for a moment, staring into his outstretched hand, then grabbed the vial and began rubbing it fast between her palms, like she was warming herself in winter. "She's cold," said Deborah, cupping her hands and blowing onto the vial. Christoph motioned us To follow him to the incubator where he warmed the cells, but Deborah didn't move. As Zakariyya and Christoph walked away, she touched it to her lips. "Your're famous," she whispered. "Just nobody knows it."
Now comes several vignettes of the brother, sister and the author being told by Christoph what culture medium was and how he moved cells from freezer to incubator to grow. How the cells
grew to fill gallon size jugs and how they do their experiments. He explained how drugs go through testing in cells, then animals, and finally humans.
Sorry but the WORLD SERIES IS ON!!! and I will finish this tomorrow!!! I really loved Christoph's
whole enthusiasm about showing them the cells using a screen and a microscope. They were so pretty, according to Deborah. Later folks! I have to keep the Cubs up and running AND WINNING!!!😍😍😍
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😢😢😢Well, they will do better tonight!
Back to the book and Christoph' s sharing Henrietta's cells! When he magnifies them on the screen, Deborah reaches out and touches the screen, rubbing her finger from from one cell to the next.
"Then Christoph grabs a piece of scrap paper and spends nearly a half hour drawing diagrams and explaining the basic the basic biology of cells as Deborah asked questions. Zakariyya turned up his hearing aid and leaned close to Christoph and the paper."
Didn't you feel as if you were right there! Christoph was so excited as he told them about DNA
and chromosomes. And they were amazed! Well this whole chapter just made me feel good about the book! But chapter 33 depressed me and Barbara's link was absolutely frightening!!! I had to stop reading both and put the book down while I gathered myself together. So I am still reading 33 but will finish it and the rest of the first half of part 3 today. It will have my complete attention
as our author tells us more about the Lack's family and the scientists that were involved.
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Annie, the schedule we posted broke part 3 right after chapter 31, so you're already two chapters ahead. However, there are only you, me, Bellamarie, and Barb left. If everyone's ready to move on, can start adding chapters now. What does anyone want?
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Sorry I jumped ahead but this author has done such a good job, I can't stop reading! 😀 So I am just reading your link, PatH. And the last half of chapter 32! There is so much in 32 and I didn't cover all of it but will at least get it read today!
So we can all start on 31 or 32 today?
A friend dropped by this week and is now going to read our book. She has her Masters degree in biology and explained the DNA and chromasones to me. And we also discussed National Geographic's DNA article. I gave my copy to Ella two weeks ago so I will send my friend,Ellen, a link to that also. She agreed with me about how scary that article is.
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PatH., and Annie, I am more than ready to move on. Just let me know if we are reading to finish the rest of the book, or are we stopping somewhere. Ooops just saw ch 32 - 38, so I will read those chapters.
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PatH, I haven't been able to open the Hippocratic Oath on your link. I click on link to the library and then on the oath but it doesn't open. Any suggestions?
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The link opens directly to a page that has the oath on it, with no further clicking. What do you see when you open it?
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Here's the text in Wikipedia, but I liked the other link better.
https://en.wikipedia.org/wiki/Hippocratic_Oath (https://en.wikipedia.org/wiki/Hippocratic_Oath)
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Pat, when i use your link, I get a library listing of what the library has available
but click on the listings does take me anywhere.
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That's weird. I get a page with a listing on the left, but you can select any of the topics and get it. I copied the Hippocratic Oath'
"DO NO HARM"
The well-known phrase "first, do no harm" is not in the Hippocratic Oath.
The context of the phrase comes from The History of Epidemics, which is part of the Hippocratic corpus:
"...But in those cases in which there was no danger, and where a concoction was made in proper time, it should be considered whether the translations of humours were good or critical signs. Concoctions always portend a crisis, and safety from the disease; but crudities, or inconcoctions are soon converted into bad translations, or a defect or want of crisis, or pain, or a duration of the disease, or death, or a relapse. What will happen from these should be considered from other circumstances, as to know what is past, to discern what is present, and to predict the future. And these two things in disease are particularly to be attended to, to do good, and not to do harm. The whole art of medicine may be circumscribed in three distinctions, medicine, the sick-man, and the physician who is the minister of the art; and the conflict lies between the sick-person, the physician, and the disease."
2. HIPPOCRATIC OATH
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:
To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.
Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.
If I fulfil this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.
Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: The Johns Hopkins Press, 1943.
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Here's the Nuremberg Code:
To some extent the Nuremberg Code has been superseded by the Declaration of Helsinki as a guide for human experimentation. The full text and more information about this code and its context can be found in the Encyclopedia of Bioethics.
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion, and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.
The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.
The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury disability or death.
The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.
During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgement required by him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.
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Here's a modern oath sometimes used:
HIPPOCRATIC OATH, MODERN VERSION
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.
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Credit from the link:
The Hippocratic Oath and the Ethics of Medicine
Use/adaption of this page with permission of Tim Ruggles of Dalhousie University.
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Pat, So now I see what I did! Good grief, so sorry! Do we want to go back and discuss Chapter 23 through Chapter 31? I have read the whole book!😢😢. I think my mind is fried.
I just finished reading what you put up and decided that if any of these oaths and codes were strictly followed, we would not experiment using human beings EVER!!!! Think of the prescription drugs that are given to us today and the RXes that are advertised on TV and in magazines! If you read side effects, you want to not take them! Even if it helps relieve your pain or whatever you have.
I know that many of these drugs can make a big difference in one's quality of life but sometimes they just don't work. And then Dr's try something else,with good intentions, and it doesn't work either so now the patient feels as they are on a merry-go-round of trying first one and then another.
I wonder if scientists or Dr's could just check our blood work to see what drugs we could take? The article I read in N.G. does speak of testing a newborn's ?????? which tells them what meds that baby's body will tolerate but only in seven genres???
Let me know if you want to discuss ch.23-31? And what about extra information after Ch.32 which is the end of the book?
Barbara, I had a hard time with story in your link. Like PatH, I would like to know more about what or how the experiments evolved? Were consent forms asked for? Was money offered? It certainly makes one want to know. Have you read the extra info after the Ch.38?
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Annie,
Let me know if you want to discuss ch.23-31? And what about extra information after Ch.32 which is the end of the book?
I am confused, we have been discussing ch 23 -31 and are now going on to 32 - 38. Ch 38 The Long Road to Clover is the actual last chapter, then there is, Where They Are Now, Afterward and Acknowledgement. I think we should definitely discuss the sections after ch 38 to complete the discussion. I have just begun ch 32, I had a very busy weekend. So while we move on, how about we just touch any points in the previous chapters anyone wants to discuss. Sound good? Do we have a time frame when we need to end this discussion? I know we were hoping for the end of October, but it was a lot to digest and read all at one time. Just let me know, but I will read 32 - 38 ASAP.
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Yes, we're now going on to the rest of the book; read as much as you want, but let's talk mostly about 32-34 at first, then add on 35-38. Yes, we need to discuss the sections after 38. Let's hold off on them until we're mostly done with the numbered chapters. There isn't a need to end at any particular time. At the moment it's listed as Nov. 4, but we can go for whatever we like.
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Bella, I agree we should read after Ch 38. There is lots of pertinent info in that part of the book. And we can take our time.
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Thanks PatH., and Annie for responding. I finished the book today, believe it or not in the waiting room of my doctor's office. I knew they make you wait so brought it along. I was discussing it with my doctor who is probably in his mid to late 30's when he noticed the book. He actually knew a little about the HeLa cells once I was telling him about the book. So much to think about now that I am done. I'll start off fresh in the morning since I am coming down off the high being with my grandkids trick or treating tonight, and also waiting for my antibiotic to work on my two ear infections, upper respiratory infection, along with sore throat. I know I should have stayed home, but the kids were way to excited for Nonnie & Papa to share in their fun night, so I will rest a lot tomorrow.
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I don't know how to say this.
I got a call from Ella's daughter this morning and Ella passed away in the middle of the night. Please keep her daughter, Cindy, in your prayers as Ella was all she had. Thankfully she has many friends here who will give her much support and comfort.
I am finished with the book and I don't want to discuss it anymore. Ella was one my best friends here in Columbus and I am just in shock. Please excuse me.
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Chapter 32 "All That's My Mother", I can see this being one of everyone's favorite chapters in the book. Deborah and Rebecca made some great strides in finally getting Zakariyya to come with them to John Hopkins to view their mother's cells. Christoph showed such compassion to them, and mentioning how he agrees with the unfairness of how the family has been treated all these years. That went a long way with Deborah and Zakariyya. I enjoyed reading where Christoph took so much time with them, to show them how to use the microscope, teaching them what they were looking at, the DNA, cell division and for them to actually see it happen at the very time they were viewing the cells. That was almost magical or inspired with thinking Henrietta herself was able to make that happen right before their eyes. They learned a lot that day, and I especially like how Zakariyya got involved and asked,
"If those our mother's cells," he said, "how come they ain't black even though she was black?" "Under the microscope, cells don't have a color," Christoph told him. "They all look the same__they're clear until we put color on them with a dye. You can't tell what color a person is from their cells."
This chapter was a feel good moment for Deborah and her brother. Christoph validated Zakariyya's feelings of being angry.
"Zakariyya has a lot of anger with all this that's been going on," she told Christoph. "I been trying to keep him calm. Sometimes he explode, but he's trying." "I don't blame you for being angry," Christoph said.
The Lacks family has gone through so much since the death of their mother, and the immortal cells, and for someone at John Hopkins to just simply take the time with them, and agree there were injustices done to the family was huge. Zakariyya left I think a better calmer man,
"As we walked toward the elevator, Zakariyya reached up and touched Christoph on the back and said thank you. Outside, he did the same to me, then turned to catch the bus home. Deborah and I stood in silence, watching him walk away. Then she put her arm around me and said, "Girl, you just witnessed a miracle."
In Chapter 33 The Hospital for the Negro Insane, yet again they come across someone who is willing to be helpful, when Deborah and Rebecca visit the records dept at Crownsville. Paul Lurz, went over and beyond what was necessary in assisting Deborah in finding Elsie's files, believed to have been destroyed. This chapter was bittersweet, and also for me heart wrenching. It finally could give Deborah closer to Elsie's time at the hospital, and death, but also it caused her so much emotional stress dealing with what she now knows.
"At one point, Deborah climbed from her car looking near tears. "I been havin a hard time keepin my eyes on the road," she said. "I just keep lookin at the picture of my sister." She'd been driving with both of Elsie's pictures on the passenger seat beside her, staring at them as she drove. "I can't get all these thoughts outta my head. I just keep thinkin about what she must've gone through in those years before she died."
It did not surprise me when in the next chapter Deborah is showing symptoms of this all affecting her emotionally, mentally, physically and medically, as she and Rebecca get back to the hotel room and begin going through all the information in the medical records. Even Deborah's trust level of Rebecca is being challenged at this point. It's like all the answers Deborah has wished for, longed for, prayed for are finally before her own eyes, yet she begins to realize how valuable these facts are and suspects Rebecca will break their trust for her own personal/financial gain. Ughhh.... that was rough reading this:
""You're lying!" she yelled again. She jumped off the bed and stood over me, pointing a finger in my face. "If you're not lying, why did you smile?" She stared frantically stuffing papers into her canvas bags as I tried to explain myself and talk her down. Suddenly she threw the bag on the bed and rushed toward me. Her hand hit my chest hard as she slammed me against the wall, knocking me breathless, my head smacking the plaster. "Who you working for?" she snapped. "John Hopkin?" "What? No!" I yelled, gasping for breath. "You know I work for myself." "Who sent you? Who's paying you?" she yelled, her hand still holding me against the wall. "Who paid for this room?" "We've been through this!" I said. "Remember? Credit cards? Student loans?"
The next morning walking down the lobby for breakfast, Deborah says to Rebecca, "We're okay, Boo."
Phew..... Rebecca sure put herself in some risky situations to get this story told.
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Oh my heavens Annie, I just hit post and saw your post. My heart breaks to hear about Ella. It is unbelievable she has passed on. I have always enjoyed my discussions with her, she actually was one of the first members to welcome me, and was always so kind. I remember years ago she and you were going to try to make a day trip to Perrysburg Ohio, so the three of us could meet each other in person, and then she fell on the ice and we had to postpone it. I will keep you and her daughter in my prayers.
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Bellamarie, that leaves just you, me, and Barb. Let's take a day off before finishing.
Question: I see a hidden villain in the book. Do you?
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PatH., I appreciate taking a day off, in memory of our dear member Ella. :'(
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I never met Ella in person, but we've been good internet friends for at least 10 years. She figuratively held my hand when I became a DL and led my first discussion, and we've worked together a lot since. It's strange how good a friendship you can have with someone you've never seen.
Although this is a shock, it isn't a surprise. Ella knew she didn't have much time left, and had made her peace with that, but we thought we had a little more time.
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Pat I am wrestling with this news - the circumstance is like last year when my best friend of 45 years had a fall and hung on for 6 weeks then passed - my brain is whirling and I still cannot land - I used to scrub floors when I was in this kind of tether but getting up and down is not like when I was even in my 60s - I need to veg - probably a few longer walks - I'll continue to post the Sonnets but I think I will call it a day here - sorry Pat but my brain is not functioning and thank goodness I have the headings for the next week of Sonnets in the can.
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It seems we have all lost our enthusiasm to finish discussing this book with the loss of our dear Ella, who was our discussion leader. PatH., I know Annie has said she is not going to return. I feel we owe it to Ella to at least give an ending to this discussion, so I would like to try to summarize the last chapters.
Deborah has finally gotten all the answers she was searching for where her mother and sister Elsie are concerned. She has the medical records and autopsy reports. She has visited both John Hopkins hospital and Crownsville. She is having a lot of physical, mental and emotional distress with this information, and is barely sleeping. She and Rebecca are going through endless nights of searching through the information, and Deborah is making her wishes known on what she will and will not agree on what Rebecca is to use in the book. She wants to honor the memory of her mother and sister. Deborah was to speak at a conference in Washington D.C. on the September 11 terrorists attacks, which means it was cancelled. Five days later she is at church and has a stroke. She recovered from the stroke, but then died on Mother's Day of 2009. Rebecca sat remembering her times with Deborah:
Sitting between me and Davon on the bed, Deborah nodded at her younger self on the screen and said, "Heaven looks just like Clover, Virginia. My mother and I always loved it down there more than anywhere else in the world." She stroked Davon's hair, "I don't know how I'm going to go," she said. "I just hope it's nice and calm. But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad." Then she smiled. "But maybe I'll come back as some HeLa cells like my mother, that way we can do good together out there in the world." She paused and nodded again. "I think I'd like that."
When I think of all I learned in this book I can't even begin to say I comprehend it all. I find myself talking to my friends and family about this book and they look at me in wonderment. I know they realize what I am saying is huge, but because they did not read the book, get to become attached to the family members, and see the force Deborah had in her search with Rebecca, they can't understand the magnitude of this book, and how it affects modern day medical research. I personally think about how Henrietta's HeLa cells may have helped doctors know the treatment of my Hepatitis A, I contracted when I was only eighteen years old, working in a fast food restaurant, just weeks before my wedding day.
As Henrietta's HeLa cells are immortal, so will be our memories of our dear Ella, who chose this book not knowing it would be her last one with our group. This book was sad, yet held so much knowledge, and so it is fitting we will be ending this discussion on a sad note with the death our Ella, but will always be grateful for all the knowledge she shared with us throughout her years with our bookclub. R.I.P.......Henrietta Lacks, Deborah Lacks, and Ella Gibbons.......
Thank you Annie, PatH., and Ella for leading this book discussion. And many thanks to Rebecca Skloot, for telling this story.
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Your summation was nice to read Bellamarie - thanks for wraping it up - yes, the stuffings went out with Ella passing - Ginny had the perfect word to describe Ella - she sparkled - her book choices were always a wonderful challenge and this one was especially so.
I am remembering the book we read about the Mary Anning in Britain who gathered her beach finds and she and her mother sold the fossils - she never received the recognition and other's took credit for her scientific understanding - at least she sold her finds where as for Henrietta there were no sales however, both women received no recognition till these many years after their death when a book is written describing their important value to the understanding of the scientific community.
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Ella's passing may have lit a "spark" in me. I bought a beautiful vintage writer's desk yesterday at a Grand Opening of Baycreek & Co. a small vintage boutique, in a very small rural town just minutes from me. I plan to begin my book I have always wanted to write. No time like the present!!!
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Good for you, Bellamarie.
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Bellamarie, thanks for that good summary of Deborah's journey of discovery, coming to terms with her mother's story, and finding a certain amount of peace.
I'll just mention a few other issues in the last part. If anyone wants to talk more, we can, or we can consider this a winding up.
Rebecca Skloot traveled a long way too. A young white woman, she had to earn the confidence of a family who had been very badly treated, both by individuals and an uncaring system. Jewish, not very religious, she ate pork with them, watched a sort of exorcism, read the Bible, and spoke up in Church, coming to understand what they were feeling. She watched Deborah wrestle with her demons, became fond of the whole family, and was devastated when Deborah died.
Deborah never saw the book, though it had been finished about the time she died.
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Although the family didn't seem to blame him, I blame Henrietta's husband Day for his behavior after her death. If he hadn't let the children be raised by such an abusive woman, they might have been much better off. Zakariyya might not have had so many anger issues, and Deborah might have had the experience of a loving stepmother to give her the emotional strength to cope with her mother's story.
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The Afterword describes the current situation with regard to consent and compensation in using someone's tissues--still sort of a mess. speculating on what would be a fair system, it's not easy to come up with an answer.
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Heading.
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PatH., Thank you. I'm glad you touched on Rebecca and her journey in writing this book. She went far out of her comfort zone as you pointed out. I do like how she was willing to include the spiritual lives of the Lacks family members, and how it affected her own personal life. She knows there was a bigger force out there and not sure if she was ready to admit it as we Christians do, but she did see, feel and know, there is something. I thought it was bittersweet that Deborah died before ever getting to read the finished book. But as she believed her mother Henrietta lives on, I too can see Deborah, Henrietta and Elsie reading it together in heaven.