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Contested IllnessesCitizens, Science, and Health Social Movements$
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Phil Brown, Rachel Morello-Frosch, and Stephen Zavestoski

Print publication date: 2011

Print ISBN-13: 9780520270206

Published to California Scholarship Online: January 2017

DOI: 10.1525/california/9780520270206.001.0001

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PRINTED FROM CALIFORNIA SCHOLARSHIP ONLINE (www.california.universitypressscholarship.com). (c) Copyright University of California Press, 2022. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in CALSO for personal use.date: 30 June 2022

Toxic Ignorance and the Right to Know

Toxic Ignorance and the Right to Know

Biomonitoring Results Communication: A Survey of Scientists and Study Participants

(p.227) 13 Toxic Ignorance and the Right to Know
Contested Illnesses

Rachel Morello-Frosch

Julia Green Brody

Phil Brown

Rebecca Gasior Altman

Ruthann A. Rudel

Carla Pérez

Alison Cohen

University of California Press

This chapter explores the ethical and scientific challenges of communicating results to communities and study participants in biomonitoring studies, which measure the presence and concentrations of chemicals and their metabolites in human tissues. Technological advances have made biomonitoring studies more common, but often scientists are faced with dilemmas regarding whether and how to report results to participants when the health implications of chemical exposures are not well understood. The chapter identifies three frameworks for reporting such data: traditional 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, whereas the other two represent new communication strategies in which study participants are engaged in interpreting, disseminating, and applying results to promote community health. The chapter then suggests five critical considerations for planning future biomonitoring studies.

Keywords:   biomonitoring studies, study participants, scientists, traditional clinical ethics, community-based research, participatory research, citizen science, community health

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