Community based participatory research - cont'd

John Lunstroth

Informed consent is a concept for an individual. But groups are recognized as more than just many individuals. They have their own identity, and the issue is how to describe a way for the group identity to consent to something. I think the concept of political health can help. The researcher must appeal to the political community for consent, not to the subject community. That implies there is a political community, which may not always be the case. If there is not, then how can consent be considered? One option is for the researchers to create a political community so it can make the kinds of decisions asked of it by the researchers. But, are researchers competent to undertake this kind of political activity? It is clear that regardless of who undertakes the political community building, the acquisition or development of a political community must not be confused with the scientific ends of the researchers. The political community, in order to be legitimate, must at least consist of value neutral ways to make community decisions. The least problematic way to accomplish the building of a political community is to have it facilitated by political workers, so there is no possibility the decision-making process is somehow influenced by the researchers.

The foregoing focus on the trees does not reveal anything about the forest of power relations. The scientific community is so ideologically, socially, institutionally, and financially powerful that subject communities may never have, on their own, the wherewithal to adequately make informed consent or its collective analogue. Well, let me correct this with a note about the misleading nature of the idea of informed consent. Informed consent is a kind of fiction we allow to stand in for real understanding. Since few subjects have scientific backgrounds, or are free from some compulsion, we have a weak standard that we say is good enough to go forward. I think especially when considered on a group basis, it is inadequate to stop any research even though in theory it is supposed to have that kind of potency. So, in most all cases researchers have access to power that subject communities will never have. At the macro-economic level few countries can withstand the commercial and scientific pressures of the drug companies. In this context it is difficult to imagine even a well-organized political community withstanding the pressure of intent researchers.