Pursuit-worthy research in health: Three examples and a suggestion.

ABSTRACT

This paper, in a nutshell, is a plea for community participation in research along with an adapted idea for how such participation should be shaped and understood. I will give varied examples of the ways in which scientists viewing a perceived problem solely from an external perspective has led to mistakes. If we do not properly take into account the knowledge and values of people with a condition, we are liable to pursue the wrong sorts of treatments. In particular, I provide examples of three ways (exemplified in the cases of "female hysteria", autism, and chronic fatigue syndrome) scientists are liable to pursue treatment of what they perceive to be at least partially mental illnesses that they/we shouldn't. I present the idea of deliberative research-the concept is based on that of deliberative democracy. The idea of deliberative democracy is that decisions should be made on the basis of reasons that would be acceptable to the target population. I similarly argue that research decisions should be made on the basis of reasons that would be acceptable to the target population, even if it requires other experts to determine how those reasons are best to be respected in the context of a particular project.