Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies

Abstract

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.

Figure 1

Strip plot of individual results showing concentration of a flame retardant chemical in house dust. Strip plots like this one have been used effectively to communicate to participants about their own results in comparison with others in the same study, a health guideline, and other benchmarks, such as NHANES results. This graph format has been evaluated in focus groups and one-on-one usability tests and interviews, including in low-income and recent-immigrant communities. Well-designed graphs have the advantage of drawing on innate visual abilities, relying less on numeracy and literacy.