Hi
This news story is doing the rounds in the news but I don't know if everyone has seen the original NY times op-ed by Angelina Jolie[1]. She talks about her preemptive and precautionary double-mastectomy because she found out she was at a higher risk for breast cancer after genetic screening. I saw the news about this earlier but didn't read her op-ed until now, it's helpful to see her perspective on this.
This might be a bit personal, but a relative passed away last year who had breast cancer and the cancer had metastasized after a mastectomy and several rounds of chemo. She was a mother of 3 and a fiercely strong woman who faced it head-on, and even made preparation for her own death when the doctors said there wasn't a lot to do near the end. Anyway, It occurred to me, what her reaction or choice would have been in this case. I've also seen this issue brought up again a few times among my friends and family, it's a scary thought and a decision most women said they wouldn't want to think about until they have to - but they all would have wanted more information to make the most informed choice possible.
It is safe to say that most people today use Wikipedia as the front line of information and resource for issues like these. Now, In Ms. Jolie's case I'm sure this was a very personal decision but she prob. also had access to the best medical resources and information about the risk and the tests. I suppose with all the charities and promotion breast cancer awareness already has - with marathons, television ads, and benefits - the true value of a resource like Wikipedia might be under-utilized. Once someone hears they are at risk or they should get tested, they most likely go to Wikipedia before a doctor to read up about it.
Anyway, I wanted to do something in this regard. I suppose it's needless to say that this is a bit personal for me. I have lurked on this list since it was founded, and besides occasional interrupts, just observed. This seems like a worthy issue to devote time to if anyone wants to join me. I still can't think of a proper way to organize this - a wikiproject doesn't seem right or if something like this already exists, but I'm not sure. I saw the related articles about the subject, some of them need cleaning up and revising the hard medical facts in to a coherent voice - generally simplifying the language. I also wanted to see if I can organize things better and put all the resources on a single page, with pictures and templates on the articles to guide people directly to a centralized resource point. I thought maybe more veteran editors here like Risker, SlimVirgin or PeteF can give some advice on how to go about organizing the information and making a start.
Kind regards Theo
[1]http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.htmlhttp://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?hp&_r=0&_r=0
Hi Theo -
I too have been reading this story with interest today. I think English Wikipedia has probably done a pretty good job of describing the use of prophylactic mastectomy, although it could be beefed up a bit, I suppose:
http://en.wikipedia.org/wiki/BRCA_mutation
Speaking personally, I'd be hesitant to do a lot of work on this large set of interconnected articles without having someone from Wikiproject Medicine involved to evaluate the quality of reference sources.
I think probably one area where some better work could be done is in categorization and linking together of the related articles. The mastectomy article could probably use some beefing up, generally speaking.
Risker/Anne
On 14 May 2013 15:56, Theo10011 de10011@gmail.com wrote:
Hi
This news story is doing the rounds in the news but I don't know if everyone has seen the original NY times op-ed by Angelina Jolie[1]. She talks about her preemptive and precautionary double-mastectomy because she found out she was at a higher risk for breast cancer after genetic screening. I saw the news about this earlier but didn't read her op-ed until now, it's helpful to see her perspective on this.
This might be a bit personal, but a relative passed away last year who had breast cancer and the cancer had metastasized after a mastectomy and several rounds of chemo. She was a mother of 3 and a fiercely strong woman who faced it head-on, and even made preparation for her own death when the doctors said there wasn't a lot to do near the end. Anyway, It occurred to me, what her reaction or choice would have been in this case. I've also seen this issue brought up again a few times among my friends and family, it's a scary thought and a decision most women said they wouldn't want to think about until they have to - but they all would have wanted more information to make the most informed choice possible.
It is safe to say that most people today use Wikipedia as the front line of information and resource for issues like these. Now, In Ms. Jolie's case I'm sure this was a very personal decision but she prob. also had access to the best medical resources and information about the risk and the tests. I suppose with all the charities and promotion breast cancer awareness already has - with marathons, television ads, and benefits - the true value of a resource like Wikipedia might be under-utilized. Once someone hears they are at risk or they should get tested, they most likely go to Wikipedia before a doctor to read up about it.
Anyway, I wanted to do something in this regard. I suppose it's needless to say that this is a bit personal for me. I have lurked on this list since it was founded, and besides occasional interrupts, just observed. This seems like a worthy issue to devote time to if anyone wants to join me. I still can't think of a proper way to organize this - a wikiproject doesn't seem right or if something like this already exists, but I'm not sure. I saw the related articles about the subject, some of them need cleaning up and revising the hard medical facts in to a coherent voice - generally simplifying the language. I also wanted to see if I can organize things better and put all the resources on a single page, with pictures and templates on the articles to guide people directly to a centralized resource point. I thought maybe more veteran editors here like Risker, SlimVirgin or PeteF can give some advice on how to go about organizing the information and making a start.
Kind regards Theo
[1]http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.htmlhttp://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?hp&_r=0&_r=0
Gendergap mailing list Gendergap@lists.wikimedia.org https://lists.wikimedia.org/mailman/listinfo/gendergap
The 'getting tested' section looks very North America and 1st world centric.
http://en.wikipedia.org/wiki/BRCA_mutation#Getting_tested
It would be an interesting Wikiversity project to look at illnesses/medical procedures/etc with participants from different regions of the world trying to document how they would need to tackle the problems involved, if it became necessary.
E.g. where is the nearest place that the test/procedure can be done, and how frequently do they do the test/procedure as that may be a major consideration in whether you would travel further to receive more experienced care. Is the test covered by public health or insurance? Are related costs covered? (e.g. travel) How much will it cost.
John Vandenberg. sent from Galaxy Note
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
2013/5/15, John Vandenberg jayvdb@gmail.com:
The 'getting tested' section looks very North America and 1st world centric.
http://en.wikipedia.org/wiki/BRCA_mutation#Getting_tested
It would be an interesting Wikiversity project to look at illnesses/medical procedures/etc with participants from different regions of the world trying to document how they would need to tackle the problems involved, if it became necessary.
E.g. where is the nearest place that the test/procedure can be done, and how frequently do they do the test/procedure as that may be a major consideration in whether you would travel further to receive more experienced care. Is the test covered by public health or insurance? Are related costs covered? (e.g. travel) How much will it cost.
John Vandenberg. sent from Galaxy Note
Hmm, there seems to be much more behind this scary story about Jolie: http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_...
I didn't know you could patent a gene and reading between the lines, I think it's a tragedy for Jolie and her family. It's true that it's an impressive PR stunt though - check the stats pn the Jolie article and the BRCA1 article, which links to the lawsuit in the lead.
http://en.wikipedia.org/wiki/Association_for_Molecular_Pathology_v._Myriad_G...
2013/5/15, Jane Darnell jane023@gmail.com:
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
2013/5/15, John Vandenberg jayvdb@gmail.com:
The 'getting tested' section looks very North America and 1st world centric.
http://en.wikipedia.org/wiki/BRCA_mutation#Getting_tested
It would be an interesting Wikiversity project to look at illnesses/medical procedures/etc with participants from different regions of the world trying to document how they would need to tackle the problems involved, if it became necessary.
E.g. where is the nearest place that the test/procedure can be done, and how frequently do they do the test/procedure as that may be a major consideration in whether you would travel further to receive more experienced care. Is the test covered by public health or insurance? Are related costs covered? (e.g. travel) How much will it cost.
John Vandenberg. sent from Galaxy Note
Natural News is full of bizarre conspiracy theory stuff... I wouldn't trust their analysis much :/
On Thu, May 16, 2013 at 11:50 PM, Jane Darnell jane023@gmail.com wrote:
Hmm, there seems to be much more behind this scary story about Jolie: http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_...
I didn't know you could patent a gene and reading between the lines, I think it's a tragedy for Jolie and her family. It's true that it's an impressive PR stunt though - check the stats pn the Jolie article and the BRCA1 article, which links to the lawsuit in the lead.
http://en.wikipedia.org/wiki/Association_for_Molecular_Pathology_v._Myriad_G...
2013/5/15, Jane Darnell jane023@gmail.com:
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
2013/5/15, John Vandenberg jayvdb@gmail.com:
The 'getting tested' section looks very North America and 1st world centric.
http://en.wikipedia.org/wiki/BRCA_mutation#Getting_tested
It would be an interesting Wikiversity project to look at illnesses/medical procedures/etc with participants from different regions of the world trying to document how they would need to tackle the problems involved, if it became necessary.
E.g. where is the nearest place that the test/procedure can be done, and how frequently do they do the test/procedure as that may be a major consideration in whether you would travel further to receive more experienced care. Is the test covered by public health or insurance? Are related costs covered? (e.g. travel) How much will it cost.
John Vandenberg. sent from Galaxy Note
Gendergap mailing list Gendergap@lists.wikimedia.org https://lists.wikimedia.org/mailman/listinfo/gendergap
Thanks - I noticed from the diffs on Wikipedia that they are trying to report something as a scoop that is actually pretty old news... I am just astonished that it is possible to "patent" a human gene!
2013/5/17, Leigh Honeywell leigh@hypatia.ca:
Natural News is full of bizarre conspiracy theory stuff... I wouldn't trust their analysis much :/
On Thu, May 16, 2013 at 11:50 PM, Jane Darnell jane023@gmail.com wrote:
Hmm, there seems to be much more behind this scary story about Jolie: http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_...
I didn't know you could patent a gene and reading between the lines, I think it's a tragedy for Jolie and her family. It's true that it's an impressive PR stunt though - check the stats pn the Jolie article and the BRCA1 article, which links to the lawsuit in the lead.
http://en.wikipedia.org/wiki/Association_for_Molecular_Pathology_v._Myriad_G...
2013/5/15, Jane Darnell jane023@gmail.com:
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
2013/5/15, John Vandenberg jayvdb@gmail.com:
The 'getting tested' section looks very North America and 1st world centric.
http://en.wikipedia.org/wiki/BRCA_mutation#Getting_tested
It would be an interesting Wikiversity project to look at illnesses/medical procedures/etc with participants from different regions of the world trying to document how they would need to tackle the problems involved, if it became necessary.
E.g. where is the nearest place that the test/procedure can be done, and how frequently do they do the test/procedure as that may be a major consideration in whether you would travel further to receive more experienced care. Is the test covered by public health or insurance? Are related costs covered? (e.g. travel) How much will it cost.
John Vandenberg. sent from Galaxy Note
Gendergap mailing list Gendergap@lists.wikimedia.org https://lists.wikimedia.org/mailman/listinfo/gendergap
-- Leigh Honeywell http://hypatia.ca @hypatiadotca
Gendergap mailing list Gendergap@lists.wikimedia.org https://lists.wikimedia.org/mailman/listinfo/gendergap
Yes, I kept thinking the doctors who talked her into this are monsters. Then saw another article on that topic and read http://en.wikipedia.org/wiki/BRCA1#Patents.2C_enforcement.2C_litigation.2C_a...
Good place to add a WP:RS on that topic.
(And my first mammogram in 6 years came back good today. Yeah!)
On 5/17/2013 2:50 AM, Jane Darnell wrote:
Hmm, there seems to be much more behind this scary story about Jolie: http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_...
I didn't know you could patent a gene and reading between the lines, I think it's a tragedy for Jolie and her family. It's true that it's an impressive PR stunt though - check the stats pn the Jolie article and the BRCA1 article, which links to the lawsuit in the lead.
http://en.wikipedia.org/wiki/Association_for_Molecular_Pathology_v._Myriad_G...
2013/5/15, Jane Darnell jane023@gmail.com:
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
I know it seems silly to congratulate you for being healthy, but congrats anyway - I know how it feels!
2013/5/18, Carol Moore DC carolmooredc@verizon.net:
Yes, I kept thinking the doctors who talked her into this are monsters. Then saw another article on that topic and read http://en.wikipedia.org/wiki/BRCA1#Patents.2C_enforcement.2C_litigation.2C_a...
Good place to add a WP:RS on that topic.
(And my first mammogram in 6 years came back good today. Yeah!)
On 5/17/2013 2:50 AM, Jane Darnell wrote:
Hmm, there seems to be much more behind this scary story about Jolie: http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_...
I didn't know you could patent a gene and reading between the lines, I think it's a tragedy for Jolie and her family. It's true that it's an impressive PR stunt though - check the stats pn the Jolie article and the BRCA1 article, which links to the lawsuit in the lead.
http://en.wikipedia.org/wiki/Association_for_Molecular_Pathology_v._Myriad_G...
2013/5/15, Jane Darnell jane023@gmail.com:
It would be nice if someone could make an analysis of the presence & depth (treatment, protocol, prevention) of articles on breast cancer vs prostate cancer on Wiki(p/m)edia, as both are becoming about the same threat in terms of live expectancy after diagnosis. We could work from there on a to-do list.
Gendergap mailing list Gendergap@lists.wikimedia.org https://lists.wikimedia.org/mailman/listinfo/gendergap