Communicating Individual Level Biomarker Data to Participant Families in Epidemiological Studies

Abstract

O-30B3-5 Background/Aims: The US Breast Cancer and the Environment Research Centers (BCERC) include studies of determinants of puberty in girls, with a focus on exposures to hormonally active agents (HAAs). Urine and serum biospecimens were collected to measure cotinine, phenols, phytoestrogens, phthalates, PCBs, PBDEs, pesticides, and perfluorinated compounds. Although individual results were not promised to the 440 families at the California site, staff felt there were ethical imperatives for providing them. Communicating technical results on a sensitive population (children) poses many challenges, particularly when health ramifications are not established. Therefore, we conducted focus groups with parents to gauge their level of interest in receiving individual results, to determine preferences for content of report-back materials and method of receipt, and to assess their understanding of biomonitoring. Methods: Four focus groups were held (one in Spanish) of 8–12 participants randomly recruited from the study cohort. Participants answered demographic and literacy questions and participated in a scripted discussion. The study team used the focus group results to design study-specific report-back materials. Results: Of the 35 attendees, 89% were female, with a mean age of 45. Participants overwhelmingly wanted to receive their daughters' biomonitoring results, even if little corresponding health information was available. Other dominant themes included preferences for seeing their daughter's levels compared to other girls in the study and to other cohorts, receiving detailed information on the chemicals, including sources and ways to limit exposure, and the opportunity to speak individually with investigators. Conclusion: Findings confirmed prior research regarding the value of involving study participants in the design process for reporting results from biomarker studies in order to best address the unique perspectives of each study population and circumstances. Designing appropriate materials and providing results requires a substantial commitment of resources that should be included in the initial study plan.