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

Abstract

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

Communication in a Human biomonitoring study: Focus group work, public engagement and lessons learnt in 17 European countries

“…The Canadian clinic-recruitment based 'Maternal-Infant Research on Environmental Chemicals' study (Haines et al, 2011) and national HBM studies in Portugal (Reis et al, 2008) have used this approach in which just the aggregate results are provided or individual results are given but only when health-based guidance values and interventions are available (Morello-Frosch et al, 2009). Other studies have moved towards a more open approach providing both individual and aggregate levels results, even if there are no clear health guidelines.…”

Ethics and data protection in human biomarker studies in environmental health

“…For the investigators, the best practice that bridges cultures is to first obtain approval for the study from the community leaders or whoever is the traditional gatekeeper for the community. If that is successful, then the investigators can approach the individuals to obtain their agreement to participate following usual procedures (Sly et al, 2009).…”

Lessons Learned From Flame Retardant Use And Regulation Could Enhance Future Control Of Potentially Hazardous Chemicals

“…4 Biomonitoring measures the presence and concentrations of chemicals in human tissues, often by measuring their breakdown products. 5 Swedish researchers Daiva Meironyté, Koidu Norén, and Åke Bergman began biomonitoring breast milk in the 1970s and documented a fiftyfold increase in levels of PBDEs in women's breast milk by 1999. 6 This finding caused immediate concern because it demonstrated dramatically increased levels of chemicals accumulated in tissues, a process known as bioaccumulation.…”

“…Instead, advocates have worked alongside scientists from the outset, and increasingly are engaged in scientific work themselves. 5 In an era in which community-based participatory research has received much acceptance in funding and research circles, 46,47 science-advocacy collaborations are far more possible and important than in the past.…”