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Table 1 Guidance on reporting personal exposure results

From: Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies

Agency/Document

Text

National Academy of Sciences, Human Biomonitoring for Environmental Chemicals, 2006

“…the committee considers that subjects should be told (or offered the chance to be told) whatever researchers know (or do not know)” (p. 73) [6]

“Effective communication of results is among the biggest challenges to the future of biomonitoring…Recommendation: Advance individual, community, and population-based strategies for reporting results of biomonitoring studies.” (p.182) [6]

State of California, California Environmental Contaminant Biomonitoring Program (SB1379), 2006

“Individuals may request and shall receive their complete results.” (Section 2, 105443 (a)) [2]

Expert team to Support BIOmonitoring in Europe (ESBIO), Development of a coherent approach to human biomonitoring in Europe, 2007

“The possibility of reporting personal results to the participants … should have particular attention in order to enhance the benefits for study participants and to raise response and commitment in return.” (p.22) [3]

“The individual pollutant concentrations of mother and child should be reported to the mother together with an evaluation of the results.” (p. 23) [3]

Statistics Canada, Canadian Health Measures Survey: Ethical, legal and social issues, 2007

“In accordance with ethical, legal and social principles, any information collected about a person should be provided to that person if requested.” (pp. 44–5) [5]

Environmental Protection Agency, Scientific and Ethical Approaches for Observational Exposure Studies, 2008

“Researchers need to develop the approach for reporting results to the participants, community, stakeholders, media, and others during the initial planning of the study.” (p. 87) [10]

Boston Consensus Conference on Human Biomonitoring, reported by Nelson et al. 2009

“…the group asserts that study participants should be able to decide whether or not they want to receive their personal results, and that an important element of this report be inclusion of action steps for reducing exposure, when these are available.” (pp. 497–8) [11]

National Conversation Leadership Council, National Conversation on Public Health and Chemical Exposures, 2011

“Recommendation 5.5: Increase public access to data by…ensuring that respondents have access to data collected on them…Study respondents should be offered the option to receive the results of health examinations and clinical tests, including biomonitoring and physical samples collected from their property. These data should be accompanied by an explanation in lay terms that provides context for the exposure measurements.” (p. 58) [7]

Interagency Breast Cancer and the Environment Coordinating Committee, Breast Cancer and the Environment: Prioritizing Prevention, 2013

“The growing consensus is that policies are needed to guide researchers in reporting study results back to participants…Researchers repeatedly have highlighted the ethical need to report back exposure information to research participants.” (p. 8–8) [8]

Consortium to Perform Human biomonitoring on a European Scale (COPHES), A systematic approach for designing a HBM Pilot Study for Europe, reported by Becker et al. 2014

“For DEMOCOPHES, in most countries, the participating mother received a letter with individual results of the chemical analyses…and mothers could indicate the wish not to receive results.” (p. 318) [4]

“The procedures for reporting personal results to the participants…required particular attention in order to enhance the value for study participants and to raise response and commitment in return.” (p. 319) [4]