In order to learn how environmental contaminants may affect health, researchers increasingly turn to biomonitoring of human blood, urine, breast milk, and other tissues, and to sampling in personal spaces, such as testing dust and air in homes. New tests measure low levels of a wide range of chemicals -- recently including phthalates, bisphenol A, brominated flame retardants (PBDEs), and perfluorinated compounds (PFOA), among many others. While the scientific aim is to analyze patterns in populations, study participants often want to learn their own individual results. The goal of this project is to develop guidelines for ethical practices in decisions about whether and how to report personal exposure results to participants when the health implications are unclear and the effectiveness of exposure reduction strategies is uncertain. As a basis for proposing ethical practices, this project investigates the experiences, values, and attitudes of participants in personal exposure assessment studies and the perspectives of IRB members, researchers, clinicians, and legal experts. Researchers and institutional review boards (IRBs) charged with protecting human research participants must respect the autonomy of study participants;weigh the benefits of reporting results, which may contribute to science literacy and inform and empower participants to take action;and consider the potential for harm, for example, from misplaced worry, stigma, or ineffective action. They also must consider legal or financial issues that may arise when contaminants are detected in a private place, such as a home. Because biomonitoring and personal exposure measurements have expanded rapidly, few models exist for reporting practices;and a 2006 National Academy of Sciences report identified a pressing need for empirical research into individual exposure report-back. This project helps to fill that gap.
The specific aims are (1) to conduct four case studies of research that has reported individual results for chemicals for which health effects are uncertain, and for each study to (a) analyze informed consent and report-back methods and (b) conduct in-depth interviews with study participants, researchers, and IRB members;(2) to conduct legal research that examines how obligations to disclose hazards under federal and state real estate and environmental laws might be triggered by measurements in homes and how disclosure obligations might conflict with participants'privacy;(3) to conduct three focus groups to further examine multiple perspectives and stimulate dialogue among researchers, IRB officials, lawyers, clinicians, and community health advocates, and (4) based on results of the other specific aims, develop, peer review, and disseminate guidelines for effective, ethical, and logistically feasible report-back protocols for personal exposure research. The four case studies encompass government, academic, and advocacy research with adults and children, including the pilot study for California's Biomonitoring Program, a cohort health study, a biomonitoring study of PFOA exposure from drinking water, and advocacy biomonitoring studies of the need for better US chemical policies.

Public Health Relevance

Environmental public health research and surveillance depends on biomonitoring and personal exposure studies that test for a wide range of chemicals for which the health effects are not yet fully understood. In these studies, researchers and human research review boards (IRBs) must weigh the potential benefits, harms, and implications for justice and autonomy of reporting individual results to participants who are tested. This project investigates the experiences, attitudes and values of study participants who received personal exposure results, and the perspectives of researchers, IRB members, clinicians, lawyers, and lay health advocates as a basis for developing and disseminating best practices guidelines.

Agency
National Institute of Health (NIH)
Institute
National Institute of Environmental Health Sciences (NIEHS)
Type
Research Project (R01)
Project #
5R01ES017514-04
Application #
8368264
Study Section
Special Emphasis Panel (ZRG1-HDM-D (90))
Program Officer
Finn, Symma
Project Start
2009-12-15
Project End
2014-10-31
Budget Start
2012-11-01
Budget End
2013-10-31
Support Year
4
Fiscal Year
2013
Total Cost
$711,313
Indirect Cost
$114,299
Name
Silent Spring Institute
Department
Type
DUNS #
884556234
City
Newton
State
MA
Country
United States
Zip Code
02458
Carrera, Jennifer S; Brown, Phil; Brody, Julia Green et al. (2018) Research altruism as motivation for participation in community-centered environmental health research. Soc Sci Med 196:175-181
Perovich, Laura J; Ohayon, Jennifer Liss; Cousins, Elicia Mayuri et al. (2018) Reporting to parents on children's exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits. Environ Health 17:48
Boronow, Katherine E; Susmann, Herbert P; Gajos, Krzysztof Z et al. (2017) DERBI: A Digital Method to Help Researchers Offer ""Right-to-Know"" Personal Exposure Results. Environ Health Perspect 125:A27-A33
Ohayon, Jennifer Liss; Cousins, Elicia; Brown, Phil et al. (2017) Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results. Environ Res 153:140-149
Goho, Shaun A (2016) The Legal Implications of Report Back in Household Exposure Studies. Environ Health Perspect 124:1662-1670
Ramirez-Andreotta, Monica D; Brody, Julia Green; Lothrop, Nathan et al. (2016) Improving Environmental Health Literacy and Justice through Environmental Exposure Results Communication. Int J Environ Res Public Health 13:
Ramirez-Andreotta, Monica D; Brody, Julia Green; Lothrop, Nathan et al. (2016) Reporting back environmental exposure data and free choice learning. Environ Health 15:2
Morello-Frosch, Rachel; Varshavsky, Julia; Liboiron, Max et al. (2015) Communicating results in post-Belmont era biomonitoring studies: lessons from genetics and neuroimaging research. Environ Res 136:363-72
Brody, Julia Green; Dunagan, Sarah C; Morello-Frosch, Rachel et al. (2014) Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies. Environ Health 13:40
Cordner, Alissa; Brown, Phil (2013) MOMENTS OF UNCERTAINTY: ETHICAL CONSIDERATIONS AND EMERGING CONTAMINANTS. Sociol Forum (Randolph N J) 28:

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