A Qualitative Study of the Ethics of Community Scientists' Role in Environmental Health Research from the Perspective of Community Scientists and Institutional Review Board Staff

Abstract

Background: Community engagement in research, including community scientists' (CSs) participation in environmental exposure assessments, promotes the bidirectional flow of information between communities and researchers and improves the development of interventions to reduce environmental health inequities. Nonetheless, institutional review boards (IRBs) with limited experience with CS research tend to struggle when reviewing protocols given CS participants' dual role as research participants and co-creators of data.

Methods: We collected focus group data from 35 Latina housecleaners eliciting their bioethical reflections on their experience as CSs before and after participation in the collection of data about their exposures to chemical compounds in cleaning products. We shared findings from CS participants and collected impressions and challenges from IRB staff from five New York City biomedical research institutions. We used a modified approach to conventional content analysis to guide data analysis and combined deductive and inductive approaches to generate codes.

Results: The CS participants emphasized their shared responsibility in the research process and bidirectional learning with the research team, which they saw as educating and empowering themselves and their broader community to create safer cleaning practices to improve the community's health and wellbeing. CS participants embraced the importance of sound science by their recognition that their community relied on the quality and accuracy of their work as CSs. Perspectives from IRB staff similarly recognized the value of participant engagement but emphasized the importance of disentangling CS activities as research participants from activities as research team members to better determine the appropriate mechanisms and authorities for assuring ethical protections.

Discussion: Findings suggest that existing bioethical principles of beneficence, respect for persons, and justice, when interpreted by participants as inclusive of protections and benefits for both the CSs and their community's collective good, reflect the bioethical values of our CS participants. However, better guidance and training is needed for researchers, IRBs, and community collaborators to apply these values and respect and protect the full range of roles for community members participating in research. https://doi.org/10.1289/EHP15824.