Posted by caraher on November 8, 2008, at 17:59:19
First, I'm not personally worried about this research project. I've always understood (especially when I disagree with what Dr. Bob does!) that in the end it is his site, and I've always assumed there would be some research use of posts here. So the announcement does not really change my conception of what does and should happen here.
But as I read others' concerns I do wonder about the "consent" side of things. A new member must pass a consent quiz, and the current version ( http://www.dr-bob.org/cgi-bin/pb/quiz.pl )was last updated in early August. According to the Consent page (not the quiz; http://www.dr-bob.org/babble/consent.html )
"This site is not currently considered research. Still, Dr. Bob may publish case studies on his web site or in a book or an academic journal."
The quiz then has a question that reads:
"The current purpose of this group is:
(Choice 1) to provide support and information
(Choice 2) to collect research data"The official answer is Choice 1, but perhaps that should be modified, since for these 230 people it seems collection of research data is a significant (if not the primary) purpose. Perhaps it could be reworded to emphasize that both purposes are being served, even if not with equal importance.
I also wonder whether, in principle, existing members should be "re-consented" if there is a significant increase in the research mission of the site. Babblers have done a good job alerting people who may have missed Bob's top-of-page announcements, but it is the researcher's responsibility to obtain informed consent. Would an institutional review board want Dr. Bob to revise the quiz? Or make existing members take a revised version, in light of the new study?
poster:caraher
thread:861598
URL: http://www.dr-bob.org/babble/admin/20081003/msgs/861598.html