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Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies
Measurement methods for chemicals in biological and personal environmental samples have expanded rapidly and become a cornerstone of health studies and public health surveillance. These measurements raise questions about whether and how to report individual results to study participants, particularl...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2014
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4098947/ https://www.ncbi.nlm.nih.gov/pubmed/24886515 http://dx.doi.org/10.1186/1476-069X-13-40 |
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author | Brody, Julia Green Dunagan, Sarah C Morello-Frosch, Rachel Brown, Phil Patton, Sharyle Rudel, Ruthann A |
author_facet | Brody, Julia Green Dunagan, Sarah C Morello-Frosch, Rachel Brown, Phil Patton, Sharyle Rudel, Ruthann A |
author_sort | Brody, Julia Green |
collection | PubMed |
description | Measurement methods for chemicals in biological and personal environmental samples have expanded rapidly and become a cornerstone of health studies and public health surveillance. These measurements raise questions about whether and how to report individual results to study participants, particularly when health effects and exposure reduction strategies are uncertain. In an era of greater public participation and open disclosure in science, researchers and institutional review boards (IRBs) need new guidance on changing norms and best practices. Drawing on the experiences of researchers, IRBs, and study participants, we discuss ethical frameworks, effective methods, and outcomes in studies that have reported personal results for a wide range of environmental chemicals. Belmont Report principles and community-based participatory research ethics imply responsibilities to report individual results, and several recent biomonitoring guidance documents call for individual reports. Meaningful report-back includes contextual information about health implications and exposure reduction strategies. Both narrative and graphs are helpful. Graphs comparing an individual’s results with other participants in the study and benchmarks, such as the National Exposure Report, are helpful, but must be used carefully to avoid incorrect inferences that higher results are necessarily harmful or lower results are safe. Methods can be tailored for specific settings by involving participants and community members in planning. Participants and researchers who have participated in report-back identified benefits: increasing trust in science, retention in cohort studies, environmental health literacy, individual and community empowerment, and motivation to reduce exposures. Researchers as well as participants gained unexpected insights into the characteristics and sources of environmental contamination. Participants are almost universally eager to receive their results and do not regret getting them. Ethical considerations and empirical experience both support study participants’ right to know their own results if they choose, so report-back should become the norm in studies that measure personal exposures. Recent studies provide models that are compiled in a handbook to help research partnerships that are planning report-back. Thoughtful report-back can strengthen research experiences for investigators and participants and expand the translation of environmental health research in communities. |
format | Online Article Text |
id | pubmed-4098947 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2014 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-40989472014-07-16 Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies Brody, Julia Green Dunagan, Sarah C Morello-Frosch, Rachel Brown, Phil Patton, Sharyle Rudel, Ruthann A Environ Health Commentary Measurement methods for chemicals in biological and personal environmental samples have expanded rapidly and become a cornerstone of health studies and public health surveillance. These measurements raise questions about whether and how to report individual results to study participants, particularly when health effects and exposure reduction strategies are uncertain. In an era of greater public participation and open disclosure in science, researchers and institutional review boards (IRBs) need new guidance on changing norms and best practices. Drawing on the experiences of researchers, IRBs, and study participants, we discuss ethical frameworks, effective methods, and outcomes in studies that have reported personal results for a wide range of environmental chemicals. Belmont Report principles and community-based participatory research ethics imply responsibilities to report individual results, and several recent biomonitoring guidance documents call for individual reports. Meaningful report-back includes contextual information about health implications and exposure reduction strategies. Both narrative and graphs are helpful. Graphs comparing an individual’s results with other participants in the study and benchmarks, such as the National Exposure Report, are helpful, but must be used carefully to avoid incorrect inferences that higher results are necessarily harmful or lower results are safe. Methods can be tailored for specific settings by involving participants and community members in planning. Participants and researchers who have participated in report-back identified benefits: increasing trust in science, retention in cohort studies, environmental health literacy, individual and community empowerment, and motivation to reduce exposures. Researchers as well as participants gained unexpected insights into the characteristics and sources of environmental contamination. Participants are almost universally eager to receive their results and do not regret getting them. Ethical considerations and empirical experience both support study participants’ right to know their own results if they choose, so report-back should become the norm in studies that measure personal exposures. Recent studies provide models that are compiled in a handbook to help research partnerships that are planning report-back. Thoughtful report-back can strengthen research experiences for investigators and participants and expand the translation of environmental health research in communities. BioMed Central 2014-05-26 /pmc/articles/PMC4098947/ /pubmed/24886515 http://dx.doi.org/10.1186/1476-069X-13-40 Text en Copyright © 2014 Brody et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Commentary Brody, Julia Green Dunagan, Sarah C Morello-Frosch, Rachel Brown, Phil Patton, Sharyle Rudel, Ruthann A Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title | Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title_full | Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title_fullStr | Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title_full_unstemmed | Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title_short | Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
title_sort | reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies |
topic | Commentary |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4098947/ https://www.ncbi.nlm.nih.gov/pubmed/24886515 http://dx.doi.org/10.1186/1476-069X-13-40 |
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