From the Cell to the Street: Personalized Report-Back in Large Cohort Studies with Multi-Level Measurements - Project Summary
A growing consensus gives researchers the responsibility to report results back to individual participants
in most studies, based on the ethical principles of autonomy, respect, equity, beneficence, and
trustworthiness. Yet, ethical report-back of research results (RBRR) is context-specific, requiring
consideration of the people and data in a particular study. New adaptations are needed, for example, to
align report-back ethics with the emerging science of the exposome, defined as the totality of social and
environmental factors across the life cycle. Exposome studies generate hundreds of measurements from
many techniques, including geospatial assessments of neighborhood stressors, biomonitoring for multiple
classes of chemicals, and indicators of health-related effects at the cellular level. Importantly, because
exposome studies evaluate the joint effects of chemical mixtures and social stressors, they are well-
positioned to support participants who are grappling with exposures in a context of environmental and
social injustice, underlining the value of RBRR to promote equity. To support ethical practices in
exposome-focused studies, this project will address a key challenge – report-back methods have yet to be
tested for large numbers of measures across multiple domains. This project will develop innovative
participant-centered methods for personalized RBRR for multi-level data in large studies and evaluate
these methods in two diverse cohorts recruited during pregnancy: Chemicals in Our Bodies (CIOB, at the
University of California, San Francisco and Berkeley) and Illinois Kids Development Study (IKIDS, at the
University of Illinois). It will build on the well-tested capabilities of the Digital Exposure Report-Back
Interface (DERBI) to generate high-quality personalized reports for smartphone, computer, and print in
studies of any size. Aim 1. Use participatory methods to develop ethical guidance for personalized RBRR
for multi-level data, including large chemical biomonitoring panels, geospatial socio-environmental
indicators, and early effect biomarkers. This aim will bring together input from participants, researchers,
and bioethicists, first to focus on CIOB/IKIDS and then to broaden input and discussion to other studies.
Aim 2. Enhance the value of RBRR for participants by developing digital tools that support participants’
ability to take action and offer them scalable social support. Drawing on theories of health behavior, a new
DERBI feature will offer opportunities for participants to identify sources of harmful chemicals that are
relevant for them and commit to individual and social actions to reduce exposures. Participants will be
invited to a social media group. Aim 3. Develop, deploy, and assess personalized RBRR for diverse types
of data in CIOB/IKIDS. New contextual information will be developed for DERBI to help participants
interpret new data types, and updated design will distill results across multiple domains. We will
randomize half of participants to test the new DERBI take-action feature. Outcome assessments include
follow-up surveys and in-depth interviews about experiences and environmental health literacy as well as
digital analytics to assess participants’ engagement with their reports.
