Collaborative Development of Ethical Report-Back Guidelines for HouseholdExposure Research - Project Summary Home-based exposures and poor housing quality contribute to health inequities (e.g., asthma, lead, reproductive health etc.) and are a driving force behind many environmental injustices. Household exposure research can inform solutions to these urgent problems. Responsible report-back of individual-level research results (RBRR) from household exposure studies is essential to promote changes in behavior, housing provider practices, community action, and policies to improve health. While high level report-back principles have been developed for environmental health research, these do not provide specific guidance on the unique ethical challenges of household exposure research. RBRR for household exposure studies raises a number of ethically contentious issues related to the actionability of results, participants’ housing status (e.g., income level, owner/renter, public/private housing), and the interests of third parties (including family members, neighbors, health professionals, landlords and community leaders), among others. This project aims to promote health equity and improve communication by developing guidelines for RBRR for household exposure studies in ways that respect participant preferences and inform appropriate action. We build on a longstanding community partnership with Rochester Energy Efficiency and Weatherization (RENEW) and actively involve a Stakeholder Advisory Board that represents the diverse perspectives of community groups, housing providers, IRBs, public health professionals and others who may be affected by RBRR. We integrate prior report back studies by recruiting participants from several past housing exposure research studies, including ROC HOME, to provide formative input to Aim 2. Successful completion of this project will result in: (Aim 1) a philosophically and empirically-informed typology of the key ethical questions faced by researchers during RBRR of household exposure studies; (Aim 2) a tool for eliciting participants’ preferences for RBRR in household exposure research; and (Aim 3) decision-support guidelines to help research teams return individual results responsibly. Our collaborative approach will use a rigorous transdisciplinary framework to fill a crucial gap in report-back guidance for household exposure research and will serve as a model for future research on report-back of environmental and non-genomic research results.
