title: Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants.
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.
  
  
  CONCLUSIONS
  Public deliberation about communication in personal exposure assessment research suggests that new forms of community-based research ethics and participatory scientific practice are emerging.
authors.affiliation: Department of Environmental Science, Policy and Management & School of Public Health, 137 Mulford Hall, University of California, Berkeley, Berkeley, CA 94720-3114, USA. rmf@nature.berkeley.edu
authors.forename: Rachel
authors.initials: R
authors.lastname: Morello-Frosch
authors.forename: Julia Green
authors.initials: JG
authors.lastname: Brody
authors.forename: Phil
authors.initials: P
authors.lastname: Brown
authors.forename: Rebecca Gasior
authors.initials: RG
authors.lastname: Altman
authors.forename: Ruthann A
authors.initials: RA
authors.lastname: Rudel
authors.forename: Carla
authors.initials: C
authors.lastname: Pérez
mesh_terms: D022126:Access to Information / Q000941:ethics*; D001822:Body Burden; D055812:Community-Based Participatory Research / Q000941:ethics*; D004781:Environmental Exposure / Q000032:analysis; D004784:Environmental Monitoring / Q000941:ethics*; D015386:Hazardous Substances / Q000032:analysis* / Q000506:poisoning; D006801:Humans; D035842:Research Subjects
chemical_list: D015386:Hazardous Substances