A partnership study of PCBs and the health of Mohawk youth: lessons from our past and guidelines for our future.

This paper describes a research partnership between the people of Akwesasne and researchers from the State University of New York at Albany for the study of polychlorinated biphenyls and the health of Mohawk youth. The study is distinctive because its goals have been set by the scientists and the community members and is being conducted jointly by these groups. The research partnership recognizes the history of relationships between native and nonnative peoples, particularly scientists, and seeks not only to fulfill certain scientific goals but to further community ones as well. The relationship is based on three principles: mutual respect, mutual equity, and mutual empowerment. These principles guided every aspect of the research process. The project goals were determined jointly to maximize data quality and minimize the intrusion of research activities into the lives of community members. Data collection is performed by research assistants who received extensive and ongoing training in data collection methods, and who are members of the community. Feedback procedures were designed by community members and scientists jointly to maximize understanding. Feedback regarding individuals' pollutant levels and assessments of growth and development are provided to each individual. Information about community pollutant levels are provided to the community. Hypothesis testing is carried out by research scientists, and the results presented first at a community meeting. Research conducted in this way--as a partnership--requires more communication, discussion, and travel, but the result is mutual satisfaction and growth.