Science of the people, by the people, and for the people?

I just got back from a symposium about so-called community based participatory research (and variations on the name and theme such as just participatory research), in particular an effort at my university to develop more of this kind of research through a center pulling together various resources of the university. I am a kind of avatar of CBPR since I work for a community based organization, while I'm on the faculty, and my research is based in the CBO and guided by the interests and needs of our clients and the organization as a community asset.

Typically, public health research is exploitive of its subjects. An academic, motivated by the need to get grants and publish in order to win tenure and promotions, devises a study using the epistemological standards that are required by NIH reviewers -- randomized controlled experiments of strictly specified interventions, or epidemiological studies that extract information from people according to highly programmed procedures. Then the Big Professor goes away and writes a paper, and the community and people who got studied hear nothing about it and get no benefit from it. It probably has little or nothing to do with anything they care about anyway.

So, there are a lot of Mom and apple pie sentiments that usually define CBPR. Representatives of the community are involved from the beginning in defining the research problem. Community people work with the academic investigators to develop interventions and/ or ways of asking questions. Members of the community get hired as interviewers. The results of the investigation are fed back to the community and the academic investigators work with the community to turn knowledge into action -- whether through education of the public, development of services, or political activism and social change.

Who could argue with that? Well, some people can because they just think that people with Ph.D.s know what they're doing and it's a waste of time and an obstacle to good science to drag the riff raff into it. But even those of us who are passionate advocates for opening up the scientific enterprise and making it a public possession know that it isn't easy. There are a lot of conceptual and practical problems.

I'll talk about a few of them as time goes on but for now, just this one. Who decides who "represents" the community? How do you find those people in the first place to join in and help define the problems and chart the path to answers? Are the people you manage to engage with really "the" people, or are you just buying in to some other, less obvious institutional inequalities?

Stay tuned.