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[ Recorded presentation ] Recorded presentation

Right-to-know, the right-to-act, and the right not-to-know: Ethical and scientific dilemmas of reporting data in biomonitoring and environmental exposure studies

Rachel Morello-Frosch, PhD, MPH1, Julia Green Brody, PhD2, Margaret Frye1, Phil Brown, PhD3, Rebecca Gasior Altman, MA3, Ruthann Rudel, MS2, and Carla Perez, BA4. (1) Center for Environmental Studies & Department of Community Health, School of Medicine, Brown University, 135 Angell Street, Brown University, Box 1943, Providence, RI 02912, 401-863-9429, rmf@brown.edu, (2) The Silent Spring Institute, 29 Crafts Street, Newton, MA 02458, (3) Department of Sociology, Brown University, Maxcy Hall, Box 1916, Providence, RI 02912, (4) Communities for a Better Environment, 1440 Broadway Suite 701, Oakland, CA 94612

The science of environmental exposure analysis has widened from monitoring pollutants in outdoor environments toward measuring contaminants in microenvironments. As a result, there has been a proliferation of biomonitoring and exposure assessment studies conducted by scientists and environmental advocacy organizations that assess the levels of pollutants in human tissue and in indoor environments. However, many pollutants examined in recent studies lack adequate clinical benchmarks, and this paucity of health data raises ethical and scientific challenges for whether and how study results should be reported and interpreted to study participants and their communities. Based on interviews with environmental health scientists, we present six issues to consider when devising report-back protocols: (1) setting realistic participant expectations; (2) negotiating participants' right-to-know and right-not-to-know; (3) contextualizing data and uncertainties; (4) creating materials that support the right-to-act; (5) addressing variation in literacy; and (6) standards of confidentiality and IRBs. We propose three frameworks for examining the science and ethics of report-back in exposure assessment studies: 1) clinical ethics; 2) community-based participatory research; and 3) citizen science ‘data judo.' While the first approach emphasizes reporting results only when the health significance of exposures is known, the latter approaches represent a new research paradigm in which study participants can interpret, disseminate, and ultimately leverage clinically uncertain ‘body burden' to promote community health. This emerging trend in environmental health science points toward innovative standards of ethical and democratic scientific practice.

Learning Objectives: At the conclusion of the session, the participant (learner) in this session will be able to

Keywords: Environmental Exposures, Research Ethics

Presenting author's disclosure statement:

Any relevant financial relationships? No

[ Recorded presentation ] Recorded presentation

Environmental Justice in the Home: Strategies to Improve Public Health

The 134th Annual Meeting & Exposition (November 4-8, 2006) of APHA