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Monday, November 7, 2011
Lingering Issues
What issues remain about the use of Henrietta Lack's cells?
A lingering issue is that of science literacy. Henrietta's family did not understand how her cells were used. A distrust of physicians and scientists stems from a lack of understanding about their work. Henrietta's family and people today cannot help shape public policy about the use of tissue cells when they don't understand the science behind the issue. In order to develop a country where the general public understands scientific issues, it must be communicated in clear language
"People want their individual humanity acknowledged and respected." People don't want to be lab rats, they don't want their cells or tissues to belong to anyone but them, unless they are acknowledged. Its like when the nazi's dehumanized the jews by giving them a number instead of a name. People don't want to be reduced down to a four letter name on a cell culture petri dish.
He says, “Do we have the trust of the public to say, ‘Look, we have your cells. What we’ll do with these cells, I can tell you to some extent now, but five or 10 years from now they could be used in a completely different way. With your permission, we need to have that flexibility.’” You can tell someone that their cells are going to be cultures to see if they continue to reproduce, but its harded to tell them what they are going to be used for after that. People feel like science occurs behind their backs and that they are kept in the dark
How did we use Hela cells to research the mating of mosquitos?
The second thing that makes informed consent complicated is the “informed” part. How can you inform someone without compromising your study? How can you predict all the times their sample will be used for or there data?
The fact that Henrietta nor her family was given any sort of credit for her immortal cells. Henrietta's children are living in near-poverty and are uncompensated for the deed their mother did.
Issues that still remain about the use of HeLa Cells are things like how there named like for ex. they gave her a label and name for her cells maybe she wouldn't or anyone would appreciate being labeled a four digit number or whatever.
Another issue I found is the contract agreement whatever they do to agree with what they do to the cells or there particles.
1) The profit argument and how the family did not receive the respect it "should" have had for their tissue donations 2) The informed consent forms of the past: the vague wording 3) Trust on scientists and researchers 4) Privacy of medical records 5) For the remaining Lacks family: the struggle to get decent medical care 6) Banking back to #1, Lacks family compensation
Something that is still an issues is the mistrust of patients toward researchers. Skloot has said “The thing that I hear more than anything [from readers] is, ‘We want to know what’s going on. We don’t want to feel like someone is doing something behind our backs.'”
The big scare behind the Lacks story is that there was this work being done without the awareness of Henrietta or her family. An industry was built without their knowledge. The fear is that there are things going on behind their back that could be anything and the would know nothing that's going on.
A lingering issue is how little understanding her family had of what her cells meant to the medical world of tissue culture. Henrietta's family didn't understand what they were being used for in scientific terms.
As much as I hate to disagree with the rest of you, I don't think that Henrietta's family should be able to be compensated for Henrietta's contribution to the science and medical world. In the 1950's, there were no such thing as informed consent, although most of the patients that passed through John Hopkins were asked for consent, it was not legally required. Gey did not ask Henrietta if she consented for her tissues to be used.
Honestly, would you get angry if you found out your cells were used to vaccinate polio.. help study leukemia.. but you received no money for it? Do you get angry at your friend for stepping on your hair after it has fallen out of your head?
Some of which I am still a little fuzzy on, but I do know for sure that with all of these Universities and hospitals none of which can show evidence of the permission given to them from Lack's family. Also I knew to an extent that we could use cells to help with human fetus but i didn't know that we could take that and have it work out of our species? What really puzzles me is why did we uses her cells to study the mating of mosquitoes?
Researchers not telling her they were going to take her cells. I admit that it would be different had they asked her permission and used the cells to make all that money. But, they didn't have informed consent. Legally, in the 50's informed consent was not necessary. Nowadays, if legal consent is not given, you get a lawsuit. Although it may seem harsh, Henrietta's family didn't know about it until informed consent was on the rise. To say that the hospital owes them something isn't surprising, but legally the John Hopkins owes them nothing.
I feel that it would be the right for Hopkins, and other corporations that make billions off it to pay for the use of the Hela. However, at the time they weren't doing anything wrong, they were just following the protocol of the time. It all comes down to consent, and the time frame. Also, this far past the discovery it seems to me that it would be impossible to track all the cells. Making that it should have been done, but now they can't do anything about it.
A lingering issue is that of science literacy. Henrietta's family did not understand how her cells were used. A distrust of physicians and scientists stems from a lack of understanding about their work. Henrietta's family and people today cannot help shape public policy about the use of tissue cells when they don't understand the science behind the issue. In order to develop a country where the general public understands scientific issues, it must be communicated in clear language
ReplyDelete"People want their individual humanity acknowledged and respected."
ReplyDeletePeople don't want to be lab rats, they don't want their cells or tissues to belong to anyone but them, unless they are acknowledged. Its like when the nazi's dehumanized the jews by giving them a number instead of a name. People don't want to be reduced down to a four letter name on a cell culture petri dish.
He says, “Do we have the trust of the public to say, ‘Look, we have your cells. What we’ll do with these cells, I can tell you to some extent now, but five or 10 years from now they could be used in a completely different way. With your permission, we need to have that flexibility.’”
You can tell someone that their cells are going to be cultures to see if they continue to reproduce, but its harded to tell them what they are going to be used for after that. People feel like science occurs behind their backs and that they are kept in the dark
How did we use Hela cells to research the mating of mosquitos?
The second thing that makes informed consent complicated is the “informed” part.
How can you inform someone without compromising your study? How can you predict all the times their sample will be used for or there data?
The fact that Henrietta nor her family was given any sort of credit for her immortal cells. Henrietta's children are living in near-poverty and are uncompensated for the deed their mother did.
ReplyDeleteIssues that still remain about the use of HeLa Cells are things like how there named like for ex. they gave her a label and name for her cells maybe she wouldn't or anyone would appreciate being labeled a four digit number or whatever.
ReplyDeleteAnother issue I found is the contract agreement whatever they do to agree with what they do to the cells or there particles.
Here's some answers that pop into my mind:
ReplyDelete1) The profit argument and how the family did not receive the respect it "should" have had for their tissue donations
2) The informed consent forms of the past: the vague wording
3) Trust on scientists and researchers
4) Privacy of medical records
5) For the remaining Lacks family: the struggle to get decent medical care
6) Banking back to #1, Lacks family compensation
Something that is still an issues is the mistrust of patients toward researchers. Skloot has said “The thing that I hear more than anything [from readers] is, ‘We want to know what’s going on. We don’t want to feel like someone is doing something behind our backs.'”
ReplyDeleteThe big scare behind the Lacks story is that there was this work being done without the awareness of Henrietta or her family. An industry was built without their knowledge.
The fear is that there are things going on behind their back that could be anything and the would know nothing that's going on.
A lingering issue is how little understanding her family had of what her cells meant to the medical world of tissue culture. Henrietta's family didn't understand what they were being used for in scientific terms.
ReplyDeleteAs much as I hate to disagree with the rest of you, I don't think that Henrietta's family should be able to be compensated for Henrietta's contribution to the science and medical world. In the 1950's, there were no such thing as informed consent, although most of the patients that passed through John Hopkins were asked for consent, it was not legally required. Gey did not ask Henrietta if she consented for her tissues to be used.
ReplyDeleteHonestly, would you get angry if you found out your cells were used to vaccinate polio.. help study leukemia.. but you received no money for it? Do you get angry at your friend for stepping on your hair after it has fallen out of your head?
Some of which I am still a little fuzzy on, but I do know for sure that with all of these Universities and hospitals none of which can show evidence of the permission given to them from Lack's family.
ReplyDeleteAlso I knew to an extent that we could use cells to help with human fetus but i didn't know that we could take that and have it work out of our species? What really puzzles me is why did we uses her cells to study the mating of mosquitoes?
Researchers not telling her they were going to take her cells. I admit that it would be different had they asked her permission and used the cells to make all that money. But, they didn't have informed consent. Legally, in the 50's informed consent was not necessary. Nowadays, if legal consent is not given, you get a lawsuit. Although it may seem harsh, Henrietta's family didn't know about it until informed consent was on the rise. To say that the hospital owes them something isn't surprising, but legally the John Hopkins owes them nothing.
ReplyDeleteI feel that it would be the right for Hopkins, and other corporations that make billions off it to pay for the use of the Hela. However, at the time they weren't doing anything wrong, they were just following the protocol of the time. It all comes down to consent, and the time frame. Also, this far past the discovery it seems to me that it would be impossible to track all the cells. Making that it should have been done, but now they can't do anything about it.
ReplyDeleteSome states want to give rights of citizenship to individual cells. How many votes would Henrietta get?
ReplyDelete