The limits of collaboration: a qualitative study of community ethical review of environmental health research.

Abstract

We assessed the effectiveness of various systems of community participation in ethical review of environmental health research. We used situation analysis methods and a global workspace theoretical framework to conduct comparative case studies of 3 research organizations at 1 medical center. We found a general institutional commitment to community review as well as personal commitment from some participants in the process. However, difficulty in communicating across divides of knowledge and privilege created serious gaps in implementation, leaving research vulnerable to validity threats (such as misinterpretation of findings) and communities vulnerable to harm. The methods used in each collaboration solved some, but not all, of the problems that hindered communication. Researchers, community spokespersons, and institutional review boards constitute organizational groups with strong internal ties and highly developed cultures. Few cross-linkages and little knowledge of each other cause significant distortion of information and other forms of miscommunication between groups. Our data suggest that organizations designed to protect human volunteers are in the best position to take the lead in implementing community review.