Community engagement and data disclosure in environmental health research

Erin N. Haynes, Sarah Elam, Roxanne Burns, Alonzo Spencer, Elissa Yancey, Pierce Kuhnell, Jody Alden, Mike Walton, Virgil Reynolds, Nicholas Newman, Robert O. Wright, Patrick J. Parsons, Meredith L. Praamsma, Christopher D. Palmer, Kim N. Dietrich

Research output: Contribution to journalArticlepeer-review

20 Scopus citations


Summary: 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.

Original languageEnglish
Pages (from-to)A24-A27
JournalEnvironmental Health Perspectives
Issue number2
StatePublished - Feb 2016

Bibliographical note

Publisher Copyright:
© 2016, Public Health Services, US Dept of Health and Human Services. All rights reserved.

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Health, Toxicology and Mutagenesis


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