Contested Illnesses Research Group
Brown University , Providence RI
This project examines the experiences, values, and attitudes of participants in personal exposure assessment studies and the perspectives of IRB members, researchers, clinicians, and legal experts in order to provide guidance about issues to consider and exemplary practices for ethical protocols to report individual results in personal exposure research. It also examines whether there are legal obligations for participants who learn results for their home to disclose contaminant levels to others.
Environmental exposure assessment in health studies and public health monitoring programs is shifting increasingly from testing for pollutants in air, soil, and water to personal exposure and biomonitoring methods that detect ever lower concentrations of a growing array of chemical contaminants -- in blood, urine, breast milk, umbilical cord blood, breathing zone air, house dust, hair, and hand wipes. Often, the health implications of these personal exposure measurements and the effectiveness of exposure reduction strategies are uncertain. As a result, personal exposure research raises ethical questions about whether and how researchers should report individual results to study participants while adhering to and balancing the goals of ethical guidelines for human subjects research: specifically, respecting participants’ autonomy, maximizing benefit, and avoiding harm. Scientists and institutional review boards (IRBs) must weigh the value of reporting results, which may inform and empower participants to change personal behaviors and contribute to community health policies, versus the potential for harm, for example, from misplaced worry, stigma, or ineffective action. They must also consider legal or financial issues that may arise, particularly when contaminants are detected in private spaces, such as a home.
This project extends our previous research by interviewing participants, researchers, and IRB representatives involved in four other studies: the California Environmental Contaminant Biomonitoring Program (CECBP) pilot testing; the Cohort Study of Young Girls' Nutrition, Environment, and Transitions (CYGNET) Study, which is the Northern California site of the NIEHS Breast Cancer and the Environment Research Centers (BCERC) epidemiology project; the Community Exposure to Perfluorooctanoic Acid (C8) Study, which investigated human exposure resulting from industrial contamination of water supplies in Little Hocking, Ohio; and the activist biomonitoring initiative “Is It In Us?” and related studies.
We will also examine how obligations to disclose hazards under federal and state real estate and environmental laws might be triggered by personal exposure measurements in homes, whether obligations change when participants receive their own results, and how disclosure obligations might conflict with participants’ privacy.
We will conduct focus groups to examine multiple perspectives -- of researchers, IRB officials, lawyers, clinicians, and lay health advocates -- on the legal and ethical issues related to reporting individual results in personal exposure assessment studies. This allows us to incorporate viewpoints in addition to the case studies and to observe how the different parties influence each other’s perspectives through dialogue.
We will also develop a guide to key issues to consider and exemplary practices for effective, ethical, and logistically feasible report-back protocols for personal exposure research, and disseminate them to researchers, IRBs, government agencies, clinicians, and health organizations.