Research

Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants

Rachel Morello-Frosch¹ , Julia Green Brody² , Phil Brown^3,4 , Rebecca Gasior Altman⁴ , Ruthann A Rudel² and Carla Pérez⁵

¹  Department of Environmental Science, Policy and Management & School of Public Health, 137 Mulford Hall, University of California, Berkeley, Berkeley, CA 94720-3114, USA

²  Silent Spring Institute, 29 Crafts Street, Newton, MA 02458, USA

³  Department of Sociology, Brown University, Box 1916, Providence, RI 02912-1916, USA

⁴  Center for Environmental Studies, Brown University, Box 1943, Providence, RI 02912-1943, USA

⁵  Communities for a Better Environment, 1440 Broadway Suite 701, Oakland, CA 94612, USA

author email corresponding author email

Environmental Health 2009, 8:6doi:10.1186/1476-069X-8-6

Published:	28 February 2009

Abstract

Background

Exposure assessment has shifted from pollutant monitoring in air, soil, and water toward personal exposure measurements and biomonitoring. This trend along with the paucity of health effect data for many of the pollutants studied raise ethical and scientific challenges for reporting results to study participants.

Methods

We interviewed 26 individuals involved in biomonitoring studies, including academic scientists, scientists from environmental advocacy organizations, IRB officials, and study participants; observed meetings where stakeholders discussed these issues; and reviewed the relevant literature to assess emerging ethical, scientific, and policy debates about personal exposure assessment and biomonitoring, including public demand for information on the human health effects of chemical body burdens.

Results

We identify three frameworks for report-back in personal exposure studies: clinical ethics; community-based participatory research; and citizen science 'data judo.' The first approach emphasizes reporting results only when the health significance of exposures is known, while the latter two represent new communication strategies where study participants play a role in interpreting, disseminating, and leveraging results to promote community health. We identify five critical areas to consider in planning future biomonitoring studies.

Conclusion

Public deliberation about communication in personal exposure assessment research suggests that new forms of community-based research ethics and participatory scientific practice are emerging.