Lay-Expert Collaboration in Federal Environmental Breast Cancer Research: A Progress Report.

This paper analyzes the underlying factors that have impacted lay-expert collaboration in the Breast Cancer and Environment Research Centers (BCERCs). The NIEHS and NCI initiated these projects in the wake of controversy regarding the role of lay women in the Long Island Breast Cancer Study Project. This study finds that effective community-based participatory practice has only been partially achieved, and that there are gaps in its implementation. I collected quantitative data in the form of a survey and qualitative data including interviews, ethnographic observations and documents. Findings show that although participatory mechanisms have been a focus of these Centers, and sometimes even meet community-based participatory principles, underlying differences between lay people and experts have gone unaddressed. The findings suggests that issues of trust, respect and frustration among lay and expert participants are actually symptoms of other issues that can be improved upon to reduce these problems. In the case of the BCERCs, lack of understanding of and training in CBPR as an alternative inquiry paradigm and divergent prior assumptions about and desired outcomes regarding environmental causes of breast cancer created challenges to effective CBPR. These issues were not consistent across BCERCs, rather, differences between BCERCs and even among advocates and scientists within individual BCERCs highlighted these problems while demonstrating the potential for overcoming them. These differences may result in new controversies once the research is completed and findings are released and need to be addressed before the Centers are refunded or similar projects are established. ..PAT.-Unpublished Manuscript [ABSTRACT FROM AUTHOR]