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Post by Rainy_Day_Woman on Oct 26, 2016 21:04:05 GMT
I haven't read the book, but I know who she is.
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Post by terri on Oct 26, 2016 21:12:10 GMT
Yes because I bought the book.
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Post by crimsoncat05 on Oct 26, 2016 21:33:18 GMT
What exactly is it that happened that was appalling? Because it appears that while she didn't consent to her tissue being used, it didn't impact her treatment or outcome in any way. They were deceptive about the collection of her cells. I'm bad at the scientific part, but basically they were unique and could be replicated over and over in a lab leading to groundbreaking finds. John Hopkins made significant amounts of money because of Henrietta Lacks. Her family had no idea they did this and John Hopkins had a history of treating black patients different than the white ones when it came to testing and treatment. They took advantage of her lack of education and harvested what they wanted from her for their own benefit. ^^^ Yes, BUT- there were no standards for that sort of tissue use back then... there was no scientific research using those types of cells at all, because hers were the first. Over time and years, they DID create rules in the scientific and medical community about that sort of thing, but not all the people involved with Henrietta Lacks and the HeLa cell line were doing things deceptively. I'm not saying that excuses everything that happened, I'm just saying it was a different time and they were basically creating that whole field of science from nothing-- they didn't think some of those rules were necessary until they thought about it, if you know what I mean. Looking back at it now with the benefit of 20/20 hindsight gives a different outlook. One other case that was discussed, about a man who also had a cell line / tumor that was 'immortal' actually lost his court case, if I recall correctly... the courts said he lost his rights to the tissue once it was removed during the medical procedure, because he consented to having it removed and it was no longer 'his' after that. ( if I recall correctly??) I'm not sure I agree with that one, actually. ETA: I should have just quoted Dalai Mama and said Ditto!! |
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Post by Tamhugh on Oct 26, 2016 21:38:59 GMT
I read the book and found it so sad. She was poor and uneducated and they were able to use her cells without her knowledge. She was only in her early 30s when she died. Johns Hopkins used her cells for research but medical supply companies still sell her cells. CBS did a piece on her awhile back and the vials of her cells go for as much as $10K per vial. Meanwhile her family has lived in squalor, with some of her children in crippling debt for medical bills. To me, that is so unethical that I can't even fathom it.
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J u l e e
Drama Llama
Posts: 6,531
Location: Cincinnati
Jun 28, 2014 2:50:47 GMT
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Post by J u l e e on Oct 26, 2016 21:45:32 GMT
At the very least, she should have had her medical bills taken care of. Use her cells and make money, but still charge her? That seems kind of horrible.
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Dalai Mama
Drama Llama
La Pea Boheme
Posts: 6,985
Jun 26, 2014 0:31:31 GMT
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Post by Dalai Mama on Oct 26, 2016 21:45:49 GMT
I read the book and found it so sad. She was poor and uneducated and they were able to use her cells without her knowledge. She was only in her early 30s when she died. Johns Hopkins used her cells for research but medical supply companies still sell her cells. CBS did a piece on her awhile back and the vials of her cells go for as much as $10K per vial. Meanwhile her family has lived in squalor, with some of her children in crippling debt for medical bills. To me, that is so unethical that I can't even fathom it. By the time they used her cells, she was dead. The doctor asked if he could take her cells and she agreed. The fact that her family is poor is irrelevant - families do not profit on the donation of cells regardless of their financial position. |
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Post by Tamhugh on Oct 26, 2016 21:57:42 GMT
I read the book and found it so sad. She was poor and uneducated and they were able to use her cells without her knowledge. She was only in her early 30s when she died. Johns Hopkins used her cells for research but medical supply companies still sell her cells. CBS did a piece on her awhile back and the vials of her cells go for as much as $10K per vial. Meanwhile her family has lived in squalor, with some of her children in crippling debt for medical bills. To me, that is so unethical that I can't even fathom it. By the time they used her cells, she was dead. The doctor asked if he could take her cells and she agreed. The fact that her family is poor is irrelevant - families do not profit on the donation of cells regardless of their financial position. See, I remembered it differently, but I read the book a few years ago. I thought she did not agree to donate the cells. The statement that JH made in 2010 regarding the case even stated that it was not standard procedure at the time to ask permission. And they removed the cells while she was receiving radiation treatment, not after she died. ETA for someone who read the book more recently, when they contacted the family and wanted cell samples for more testing, were they properly informed of what they would be used for? |
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AnotherPea
Pearl Clutcher
Posts: 2,970 
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Post by AnotherPea on Oct 26, 2016 22:07:06 GMT
yep.
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Post by SockMonkey on Oct 26, 2016 22:13:00 GMT
Henrietta Lacks is? I had a conversation with a telemarketer that prompted this question. Know, read the book, and the author visited our local school district! |
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Post by SockMonkey on Oct 26, 2016 22:16:32 GMT
Totally appalling what happened to this woman, yet a fascinating read. This is an honest question because I haven't read the book and I haven't given a thought to what happens to tissue that is taken during a biopsy before. What exactly is it that happened that was appalling? Because it appears that while she didn't consent to her tissue being used, it didn't impact her treatment or outcome in any way. So, you should totally read the book. It's an excellent read. Basically, Lacks had a tumor biopsy and her cells were cultured and used in a wide variety of research, including the development of the polio vaccine. Beacause her cells in particular were so hearty, they were cloned and mass produced for use in labs all over. There are bunches of bioethical issues raised around this, including who owns your cells, your DNA, etc. Super fascinating topic. |
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marianne
Pearl Clutcher
Not my circus, not my monkeys. . . My monkeys fly!
Posts: 4,176
Location: right smack dab in the middle of SC
Site Supporter
Jun 25, 2014 21:08:26 GMT
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Post by marianne on Oct 26, 2016 22:20:46 GMT
Totally appalling what happened to this woman, yet a fascinating read. This is an honest question because I haven't read the book and I haven't given a thought to what happens to tissue that is taken during a biopsy before. What exactly is it that happened that was appalling? Because it appears that while she didn't consent to her tissue being used, it didn't impact her treatment or outcome in any way. In my mind, harvesting this woman's cells without her knowledge and informed consent was, at the least, duplicitous. The uniqueness of her cells has resulted in major breakthroughs in biomedical research and medical science, contributing to saving untold numbers of lives, and continues to this day. Johns Hopkins and all the connected researchers/scientists benefited immensely from Mrs. Lacks cells; she never received acknowledgement, let alone recognition, for her contribution to science, and certainly not one single penny. It's only been 5 or 6 years since Johns Hopkins themselves finally deemed it fitting to even recognize her contribution. While it may not have impacted her treatment or outcome, I think that's pretty appalling. |
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Deleted
Posts: 0
Nov 23, 2024 1:12:16 GMT
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Post by Deleted on Oct 26, 2016 22:22:59 GMT
Interesting and thanks for the explanation. I've had a couple of tissue biopsies and I don't recall anything that I've signed saying I would or wouldn't consent to further use/testing of my samples but maybe law on that is well defined now.
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Dalai Mama
Drama Llama
La Pea Boheme
Posts: 6,985
Jun 26, 2014 0:31:31 GMT
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Post by Dalai Mama on Oct 26, 2016 22:53:16 GMT
By the time they used her cells, she was dead. The doctor asked if he could take her cells and she agreed. The fact that her family is poor is irrelevant - families do not profit on the donation of cells regardless of their financial position. See, I remembered it differently, but I read the book a few years ago. I thought she did not agree to donate the cells. The statement that JH made in 2010 regarding the case even stated that it was not standard procedure at the time to ask permission. And they removed the cells while she was receiving radiation treatment, not after she died. ETA for someone who read the book more recently, when they contacted the family and wanted cell samples for more testing, were they properly informed of what they would be used for? It's been a few years for me too so I went back and read the passages. The cells were removed both during the biopsy and the autopsy. Nobody was asked if they could use the cells but there was also no code of ethics in place at the time that would require them to ask. They did get permission for the autopsy and there was some vague reference to a conversation where Gey told Lacks' husband that they wanted to 'run tests that would help his children one day'. |
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theshyone
Pearl Clutcher
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Post by theshyone on Oct 27, 2016 1:46:24 GMT
Yes
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zookeeper
Pearl Clutcher
Posts: 3,909
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Post by zookeeper on Oct 27, 2016 2:07:14 GMT
Yes, I do. Her story is heart breaking and fascinating and miraculous all at the same time.
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Post by 2peaornot2pea on Oct 27, 2016 2:29:20 GMT
I know who she is. Several years ago I read the book, The Immortal Life of Henrietta Lacks.
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Post by 2peaornot2pea on Oct 27, 2016 2:31:37 GMT
Totally appalling what happened to this woman, yet a fascinating read. This is an honest question because I haven't read the book and I haven't given a thought to what happens to tissue that is taken during a biopsy before. What exactly is it that happened that was appalling? Because it appears that while she didn't consent to her tissue being used, it didn't impact her treatment or outcome in any way. Read the book. |
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Post by brina on Oct 27, 2016 2:37:13 GMT
I do. I read the book about her. She is a black woman that doctors experimented on instead of trying to cure her. The book is titled The Immortal Life of Henrietta Lacks by Rebecca Skloot. The doctors did NOT experiment on her instead of trying to cure her. The collection of her tissue and its subsequent use without compensation to the family is an extremely interesting discussion. One could even argue about the difference in care between African Americans in the south (or anywhere for that matter) during that era. But her doctors DID treat her and the collection of her cells and the subsequent use of them had absolutely nothing to due with the primary treatment of her cancer or her death. thank you. I have read the book and in all honesty don't feel the family was entitled to money. She was treated at a teaching hospital. A tumor was removed and cell line was grown. Its not like they stole from her or experimented without treating. SaveSave |
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Deleted
Posts: 0
Nov 23, 2024 1:12:17 GMT
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Post by Deleted on Oct 27, 2016 2:50:22 GMT
Yes. Quite an interesting/sad story and some shockingly unethical (IMO) actions perpetrated by the research community.
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Jili
Pearl Clutcher
SLPea
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Jun 26, 2014 1:26:48 GMT
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Post by Jili on Oct 27, 2016 3:01:11 GMT
Yes-- I read the book several years ago. I would highly recommend it to anyone. It was a good read and very thought provoking.
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Deleted
Posts: 0
Nov 23, 2024 1:12:17 GMT
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Post by Deleted on Oct 27, 2016 3:31:21 GMT
I doubt that my telemarketing calls differ from anyone else. Maybe my response does. *shrugs* The call was from the Center For Disease Control. But -- how did this turn into a discussion of the Lacks lady? The Center for Disease Control employs telemarketing? What are they selling?
I had heard of the existence of the person you mentioned, but I didn't remember her name and didn't read the book. I probably heard it on NPR. They "sell" random flu shot surveys. ETA: I put sell in quotes since they're not really selling anything not to sound snarky for your asking! Save |
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Post by sugarmama on Oct 27, 2016 3:34:50 GMT
Sorry ladies, if I wrote misleading info about the book. I read it years ago when it first came out, so my memory may be foggy, like Hilary's.  I need to get it and re-read because for some reason, I am thinking that at some point she saw a doctor when she had an std and they did not treat her for it. At any rate, she would have received better care if she had not been a poor, black woman. |
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Post by anniefb on Oct 27, 2016 4:23:55 GMT
Not until I read this thread. I do recall reading/hearing about it but didn't recall the name.
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Post by jackietex on Oct 27, 2016 4:40:45 GMT
Yes. I didn't until the book came out.
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moanicac
Shy Member
Posts: 45
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Post by moanicac on Oct 27, 2016 13:14:50 GMT
Yes. The story of her contributions was a book selection for my book club.
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ginacivey
Pearl Clutcher
refupea #2 in southeast missouri
Posts: 4,685
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Post by ginacivey on Oct 27, 2016 15:34:46 GMT
if I recall correctly... the courts said he lost his rights to the tissue once it was removed during the medical procedure, because he consented to having it removed and it was no longer 'his' after that. ( if I recall correctly??) I'm not sure I agree with that one, actually. i believe it was a SC ruling in 2013 and the HeLa line was mentioned in the brief. i'd like to hear Olan opinion on the bioethicial issue and the lack of compensation gina |
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Post by papersilly on Oct 27, 2016 17:31:22 GMT
I heard about her but didn't know the name. I think it's amazing to have a part of you be such an important part of medical research.
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scorpeao
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Posts: 4,524
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Jun 25, 2014 21:04:54 GMT
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Post by scorpeao on Oct 28, 2016 5:49:18 GMT
I do because I routinely grow her cells |
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Post by lesserknownpea on Oct 28, 2016 8:04:58 GMT
Yes, do tell more. Very very fascinating book
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Post by Mary_K on Oct 28, 2016 10:28:27 GMT
I do because I routinely grow her cells Then can you explain, in layman's terms, why her cells didn't die outside her body like other people's cells? |
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