Measurement methods for chemicals in biological and personal environmental samples have expanded rapidly and become a cornerstone of health studies and public health surveillance. These measurements raise questions about whether and how to report individual results to study participants, particularly when health effects and exposure reduction strategies are uncertain. In an era of greater public participation and open disclosure in science, researchers and institutional review boards (IRBs) need new guidance on changing norms and best practices. Drawing on the experiences of researchers, IRBs, and study participants, we discuss ethical frameworks, effective methods, and outcomes in studies that have reported personal results for a wide range of environmental chemicals. Belmont Report principles and community-based participatory research ethics imply responsibilities to report individual results, and several recent biomonitoring guidance documents call for individual reports. Meaningful report-back includes contextual information about health implications and exposure reduction strategies. Both narrative and graphs are helpful. Graphs comparing an individual’s results with other participants in the study and benchmarks, such as the National Exposure Report, are helpful, but must be used carefully to avoid incorrect inferences that higher results are necessarily harmful or lower results are safe. Methods can be tailored for specific settings by involving participants and community members in planning. Participants and researchers who have participated in report-back identified benefits: increasing trust in science, retention in cohort studies, environmental health literacy, individual and community empowerment, and motivation to reduce exposures. Researchers as well as participants gained unexpected insights into the characteristics and sources of environmental contamination. Participants are almost universally eager to receive their results and do not regret getting them. Ethical considerations and empirical experience both support study participants’ right to know their own results if they choose, so report-back should become the norm in studies that measure personal exposures. Recent studies provide models that are compiled in a handbook to help research partnerships that are planning report-back. Thoughtful report-back can strengthen research experiences for investigators and participants and expand the translation of environmental health research in communities.
Understanding the short- and long-term impacts of a biomonitoring and exposure project and reporting personal results back to study participants is critical for guiding future efforts, especially in the context of environmental justice. The purpose of this study was to evaluate learning outcomes from environmental communication efforts and whether environmental health literacy goals were met in an environmental justice community. We conducted 14 interviews with parents who had participated in the University of Arizona’s Metals Exposure Study in Homes and analyzed their responses using NVivo, a qualitative data management and analysis program. Key findings were that participants used the data to cope with their challenging circumstances, the majority of participants described changing their families’ household behaviors, and participants reported specific interventions to reduce family exposures. The strength of this study is that it provides insight into what people learn and gain from such results communication efforts, what participants want to know, and what type of additional information participants need to advance their environmental health literacy. This information can help improve future report back efforts and advance environmental health and justice.
Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents’ experiences of learning their children’s environmental chemical and biomonitoring results in the Green Housing Study of asthma. The Green Housing Study measured indoor chemical exposures, allergens, and children’s asthma symptoms in “green”-renovated public housing and control sites in metro-Boston and Cincinnati in 2011–2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed. Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change. Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities.
Reporting data back to study participants is increasingly being integrated into exposure and biomonitoring studies. Informal science learning opportunities are valuable in environmental health literacy efforts and report back efforts are filling an important gap in these efforts. Using the University of Arizona’s Metals Exposure Study in Homes, this commentary reflects on how community-engaged exposure assessment studies, partnered with data report back efforts are providing a new informal education setting and stimulating free-choice learning. Participants are capitalizing on participating in research and leveraging their research experience to meet personal and community environmental health literacy goals. Observations from report back activities conducted in a mining community support the idea that reporting back biomonitoring data reinforces free-choice learning and this activity can lead to improvements in environmental health literacy. By linking the field of informal science education to the environmental health literacy concepts, this commentary demonstrates how reporting data back to participants is tapping into what an individual is intrinsically motivated to learn and how these efforts are successfully responding to community-identified education and research needs.