40 Years and Three Generations: Science + Community Engagement + Public Health = Better Science and a Healthier Community

摘要

The Michigan PBB Research Registry consists of ～6,000 people exposed to polybrominated biphenyls following their accidental introduction into Michigan's animal feed (1973). Multiple health problems found to be associated with this exposure include earlier puberty, more miscarriages, and breast cancer among women and more genitourinary problems among men. Research continued with the Registry for almost forty years with minimal community engagement, until recently, when the Registry was transferred to Emory University. The Emory researchers initiated community engagement activities with the goals of disseminating research findings to those affected, responding to community needs regarding education, incorporating community input into aspects of study design, and to facilitate long-term participation. These community engagement efforts have led to significant modifications of proposed outreach activities, research protocols, and the research priorities going forward. For example, the affected community's continued health concerns were added into study health questionnaires; the age range for study participation was expanded to include those exposed during childhood; additional exposed individuals were enrolled or re-enrolled into the Registry. Chemical workers and family members had been removed from the original Registry because of multiple exposures. In response to communtiy requests, the Emory team applied exposome methods (metabolomics) to evaluate their multiple exposures. Community concerns regarding multi-generational effects and continued high-levels of PBB body burden led to recently funded epigenetics study and clinical trial aimed at accelerating elimination of POPs. Community engagement efforts have evolved far beyond the original goals into a genuine community-based participatory research partnership, where the community has identified research questions, helped develop the research approach, and is an integral part of the research decisionmaking.