The Right to Know, the Right to Act, and the Right Not-to-Know: Ethical and Scientific Dilemmas of Reporting Data in Body Burden Research.

The science of environmental exposure analysis has widened its gaze from a previous focus on monitoring pollutants in outdoor environments toward measuring contaminants in microenvironments, including human bodies. As a result, there has been a proliferation of biomonitoring and exposure assessment studies conducted by scientists and environmental advocacy organizations that assess the levels of pollutants in human body tissue and in indoor environments where humans live, work, and play. This trend has unleashed a new form of struggle for emancipatory knowledge about the body, in which communities demand the facts and causes of chemical trespass in their tissues. However, the pollutants examined in many of these studies have little or no information about their human health effects, and this paucity of health data raises ethical and scientific challenges for whether and how study results should be reported and interpreted to study participants and their communities. We propose three frameworks for examining the science and ethics of report-back in exposure assessment studies: 1) clinical ethics; 2) community-based participatory research; and 3) citizen science 'data judo.' While the first approach emphasizes reporting results when the health significance of exposures is known, the latter two approaches represent a new research paradigm in which study participants can potentially play a broader role in interpreting, disseminating, and ultimately leveraging results of corporal contamination to take action to promote community health. This new frontier of research report-back in environmental health science points the way to new standards of ethical and democratic scientific practice. ..PAT.-Unpublished Manuscript [ABSTRACT FROM AUTHOR]