We've been quoted... "Thank God it's November!"

Anonymous

Yep!  I stand corrected on that one.  Anything on the whole dang internet. 

Nicki

kingsj

Dear breastcancer.org participants,

I appreciated reading all your comments on my piece in the National Post last Saturday, November 3 ('Sugar Coated Disease) and wanted to
respond, in particular, to the concerns some of you expressed about my quoting from your contributions to breastcancer.org.

First, I am truly sorry if you felt exploited or exposed. I can understand why you feel that way and in hindsight I realise it would have been appropriate to ask permission to quote from your conversations.

By way of explanation, but not excuse, I did, much earlier in the process of researching this article (the whole thing took over a year
and was bounced from editor to editor and publication to publication, partly I have been led to believe, because of concerns about upsetting
advertisers), look into ethics procedures governing the use of this type of material. I am an academic, not a journalist, by training and I am new to this genre of writing. The editors I worked with over the course of the year did not require this of me, but I was personally concerned about
whether or not I should quote without permission.  It turns out that there's actually much debate about the use of such material even in academic work and the regulations governing my institution, for example, were under review at that time. I also, several months ago, called breastcancer.org to talk to them about the piece, but was unable to get a response. Of course, I realise that, regardless of formal regulations, it would have been polite to ask participants on the boards for their permission and that some of you post to the list with the understanding that what you say will remain on breastcancer.org. I can only say that I intended to contact you and then dropped the ball in the rush to get the article published in a timely manner. I am sincerely sorry for any distress this oversight may have caused. This
has been a good learning experience for me.

Writing in popular publications is not part of my job requirements as a professor, nor is it something I do for financial gain. I have a long standing commitment to research that intervenes in social injustices in the realm of health, and the interest that the media showed in my book on the pink ribbon industry provided me with an opportunity to engage in discussions of such injustices with a much broader audience than normal. I continue to learn a great deal from these interactions and for this I am exceedingly grateful. I also hope to make fewer mistakes as I continue with this work.

Thank you, again, for your engagement and for ploughing through this rather long post.

Sincerely,

Samantha

OneBadBoob

"Isn't anyone else completely appalled that she took posts from this website and put them in her article? Did all those women give permission? Or did she just sign on, and milk our personal exchanges for her article? Speaking of exploitation . . .

She even used actual user names. So if you posted something here and your user name is at all recognizable to people who know you, they can read your posts in the newspapers. Nobody's concerned about that?

This is really wrong and violates the rules of the website."

Just saw this post.

I too feel this way.  I have certainly never heard of a journalist quoting copyrighted material and publishing it without the permission of the owner of the copyright.  In the US I am quite sure this would be legally actionable.  Not sure what the laws are in Canada.

Unless I missed something and BreastCancer.org gave permission to Samantha to use these quotes, including names?

This is really disturbing.  I just hope and pray that not one woman out there will be afraid to post and ask for help because of this unfortunate invasion. 

This, the troll that actually posted that one of our alive and fighting members passed away, the ex-wife of one of the member's husband trolling here and making trouble. . .  What next?

I have chosen to change my avitar and remove all personal info from the site--

I don't understand your publisher, Samantha.  Several times I was quoted in articles in national US publications, and each time I actually received calls from the publisher to verify the accuracy of the information I had given and that I was giving permission for my name and City and State to be used.  Is that not done anymore?

This is a learning experience for me also.

It is too late now Samantha, but I am sure if you would have made a post here and asked for the opinions on "Pink October" from these wonderful women "down in the trenches" fighting for their lives with breast cancer, and given them the option of being quoted anonymously or giving their names, you would have gotten much better in depth information than just "milking our personal exchanges" for your article.  And caused a whole lot less stress.

That is my $.02 worth.  I hope I have not offended anyone of the Members here.