Community Engagement and Data Disclosure in Environmental Health Research

• Published in: Environmental health perspectives Vol. 124; no. 2; p. A24
• Main Authors: Haynes, Erin N, Elam, Sarah, Burns, Roxanne, Spencer, Alonzo, Yancey, Elissa, Kuhnell, Pierce, Alden, Jody, Walton, Mike, Reynolds, Virgil, Newman, Nicholas, Wright, Robert O, Parsons, Patrick J, Praamsma, Meredith L, Palmer, Christopher D, Dietrich, Kim N
• Format: Journal Article
• Language: English
• Published: United States National Institute of Environmental Health Sciences 01.02.2016
• Subjects: Adolescent; Air quality; Biomarkers; Brain research; Brief Communication; Child; Child, Preschool; Children & youth; Community; Community involvement; Community-Based Participatory Research; Disclosure; Disclosure of information; Environmental Exposure; Environmental Health; Environmental Monitoring; Environmental Pollutants - analysis; Environmental protection; Environmental research; Environmental studies; Federal funding; Female; Forecasts and trends; Graphs; Hair - chemistry; Health education; Humans; Infant; Male; Management; Manganese; Manganese - analysis; Medical research; Metals; Ohio; Participation; Pediatrics; Pilot Projects; R&D; Research & development; Research methodology; School districts; School superintendents; Studies; Verbal communication; United States > US; Ohio; British Isles, England, Merseyside, Liverpool; USA, Ohio
• ISSN: 0091-6765; 1552-9924
• DOI: 10.1289/ehp.1510411

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.