Federal funding agencies increasingly support stakeholder participation in environmental health studies, and yet there is very little published research on engagement of community members in the development of data disclosure (DD) strategies. The Ohio Environmental Protection Agency reported airborne manganese (Mn) concentrations in East Liverpool, Ohio, 30 times higher than the reference concentration, which led to an academic–community research partnership to address community concern about Mn exposure, particularly among children. Children and their families were recruited to participate in a pilot study. Samples of blood and hair were collected from the children and analyzed for metals. DD mechanisms were developed using an iterative approach between community and academic partners. Individual DD letters were mailed to each participating family, and a community meeting was held. A post-meeting survey was administered to gauge community perception of the DD strategies. The purpose of this article is to demonstrate the effectiveness of engaging community partners in the conduct of environmental health research and in the development of DD strategies for individuals and the community at large. Scientists should include community partners in the development of DD strategies to enhance translation of the research findings and support the right of study participants to know their individual results.
1Department of Environmental Health, College of Medicine, University of Cincinnati, Cincinnati, Ohio, USA; 2Center for Clinical and Translational Science and Training, University of Cincinnati, Cincinnati, Ohio, USA; 3Kent State University at East Liverpool, East Liverpool, Ohio, USA; 4Save Our County, Inc., East Liverpool, Ohio, USA; 5Department of Journalism, College of Arts and Sciences, University of Cincinnati, Cincinnati, Ohio, USA; 6Division of Epidemiology and Biostatistics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA; 7Division of General and Community Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA; 8Department of Preventive Medicine, Division of Environmental Health, Mount Sinai Hospital, School of Medicine, New York, New York, USA; 9Laboratory of Inorganic and Nuclear Chemistry, Wadsworth Center, New York State Department of Health, Albany, New York, USA; 10Department of Environmental Health Sciences, School of Public Health, University at Albany, Albany, New York, USA
*Deceased.
Recommended Citation:
Erin N. Haynes,1 Sarah Elam,2 Roxanne Burns,et al. Community Engagement and Data Disclosure in Environmental Health Research[J]. Environmental Health Perspectives,2016-01-01,Volume 124(Issue 2):A24