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New York, 4:48 AM
Mon Nov 23
18 posts in the last 24 hours
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08/05/09
There are only 74 participants, which is fairly large for a qualitative study but isn't big enough to say how much of the biomedical work with sex workers is problematic. Some of the people they interviewed have never been research participants.
On the consent issue, they seem to be pointing out a problem with the on the ground staff more than than the protocol itself. In my experience, a lot of these studies use local workers to ease cultural barriers and it seems like their training might be the issue.
Some of it does suggest that better organized sex worker research would help. There are people who research condom negotiations and people who research microbicides and people seem to want to be offered both (which honestly might be hard since those are often different funding streams, but at least better organization might help sex worker groups connect with the right researchers).
Most of what they mention is fairly common with the more social science researchers. But it isn't so common with the drug trial stuff (its pretty hard to be participatory and do a double blind study, which you need to develop new drugs). Its a little bit of a catch 21, you can do all the community participatory stuff, but you're going to have a harder time creating effective new medicines.
08/05/09
08/05/09
08/05/09
08/05/09
Sometimes they aren't that clearly written. But really, lots of people totally zone out or choose not to read the informed consent part of the form when they are clearly written. Informed consent isn't as simple as "here is a clear explanation of what we are doing and your rights as a participant."
What they're talking about is more participatory research, were members of the group help design the research. Its pretty common in behavioral health research, but its a lot trickier with actual drug trials.
08/05/09
08/05/09
Everyone participating in research should be fully informed.
08/05/09
Replace "sex workers" with "everyone."
08/05/09
But eh, my psychological research ethics class was years ago.
08/05/09
08/05/09
For example, I do research on children's understanding of symbols. I explain to the parents that I'm interested in how children understand different kinds of symbols (numbers, letters, pictures, etc.), I thoroughly explain what kinds of activities I'll be doing with their child, and invite them to watch and ask any questions they have. I rarely tell them things like what the different conditions are, my rationale for thinking children of different ages will treat certain symbols differently, why I selected these age groups etc. That's all big picture research information that most participants just don't care that much about.
I suspect that what this article is getting at is that for sex workers (and probably other sensitive research areas) knowing exactly why the researchers are interested and what they are trying to do in a big picture way is JUST as important as what their experiences as participants will be. They're in a position that could be easily exploited, and understandably they don't want to participate unless they know the big picture of how the research will work.
So, in other words: For some groups, more than informed consent is necessary.