Research
Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants
Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants
Rachel Morello-Frosch*1, Julia Green Brody2, Phil Brown3,4, Rebecca Gasior Altman4, Ruthann A Rudel2 and Carla Pérez5
Environmental Health 2009, 8:6
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.
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.
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.
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.
suggests that new forms of community-based research ethics and participatory scientific practice
are emerging.
