Posted by shar on January 25, 2001, at 9:40:33
In reply to Re: Institutional Review Board policies, posted by danf on January 25, 2001, at 5:19:05
I agree with Dan. I've thought of several projects that would be interesting to do with this information; a survey of meds and those that appear to be most successful, or those that seem to have the most side effects, or issues people bring up most often related to meds (will I be on them forever? I'm scared of starting.).
It would be interesting to compare PB with other like forums on the Internet. There would be many ways to go with that idea.
For the record, I would not feel constrained in any way from using the posts here. I would probably present more aggragated information which would make the use of screen names less likely, but I would use names or initials and not feel I was violating anyone's privacy since, as Dan said, posting here is akin to writing to a newspaper.
I'm not sure how many warnings people want you to have, Dr. Bob. Is there a magic number? Should the sign up screen have a warning in size 24 font? Should there be an additional screen whenever anyone signs on that makes them agree to terms of using the board, each and every time? Or maybe they should have 3 or 4 screens to go through, warning them over and over again that this is a public site.
It worries me when stuff like this happens, that often the tempest in the teapot ends up eliminating a good thing.
When I read the "I can do what I want" caveat, I knew immediately I wouldn't say anything that could identify me personally, plus I made my screen name something other than my real name. Recently, someone in my therapy group (where I have mentioned Psychobabble) asked me if I was Shar. (Hmmmm, I thought, have I copped to any criminal activity on that board?)
D--quit lurking and start posting!!
Shar
> There are 2 very different issues here.
>
> The first: does an IRB need to decide if a support board is research, in & of itself ?
>
> I think not. This board stands alone, on it's own merits & has public access. What many of the posters do not understand is that posting here is akin to writing a letter to a newspaper editor. If one does not want the whole world to have access, then do not post.
>
> pseudo names ( screen names ) are available to protect the identity & privacy of all who post here. BUT, just like when your letter is published in a newspaper, all the information in posts is available for anyone to read....
>
> The second question is: Does an IRB need to give consent when public information is used to write a paper that compiles information & draws conclusions.
>
> Again, I think not. There is no doctor patient relationship here. There is no expectation of privacy. There is no copyrite ownership of a post by the poster, once it is made here...
>
> & again the analogy/comparison of a letter to a newspaper editor holds. I can see no reason why an IRB would have any jurisdiction over evaluation of public published information.
>
> The net medium of publication does not confer any special or unique rights to the posters here.
>
> I could legally & ethically do a research paper based on information posted on this BB... It would not require the permission or even notification of Dr Bob or of any of the posters...
poster:shar
thread:315
URL: http://www.dr-bob.org/babble/admin/20001124/msgs/320.html