Rethinking the disclosure debates: a situational analysis of the multiple meanings of human biomonitoring data

Abstract

This article examines recent debates in the USA regarding the communication of personal ‘human biomonitoring’ data to research participants. Biomonitoring is a technique used to measure environmental chemicals, their metabolites, and/or byproducts in human fluids and tissues. Though first used in occupational settings in the early twentieth century, the tools and techniques used in biomonitoring have been substantially refined in recent decades, resulting in the production of a progressively large volume of human exposure data. While the use of biomonitoring has shed new light on human exposures to a wide array of chemicals ranging from pesticides to plasticizers, it has also raised new scientific, social, and ethical questions. Among these is whether or not researchers are obligated to provide research participants with personal data in light of the considerable uncertainties that currently surround the interpretation of these data: health implications are typically unknown and measured chemical concentrations may not reflect average exposures. To date, scientists, environmental health advocates, and health officials remain divided on the best course of action. One explanation for this discord points to differing interpretations of bioethical principles. This article offers an alternate explanation. Based on a qualitative, sociological study of biomonitoring in the USA, this article shows that these debates are also shaped by fundamentally different ways of evaluating and assigning meaning to biomonitoring data. This article describes three different positions on the usefulness of individual-level biomonitoring and the criteria on which these assessments are based.

Keywords:

• human biomonitoring
• disclosure
• communication
• ethics
• situational analysis

Acknowledgements

This research was supported by funding from the University of California Toxic Substance Research and Teaching Program, the University of California, San Francisco Graduate Division, and the Bellarmine College of Liberal Arts at Loyola Marymount University. I thank all of the respondents who contributed to this study by sharing their time and perspectives on biomonitoring. I also thank Peter Davidson, Carrie Friese, Katie Hasson, Martine Lappe, Theresa MacPhail, and Jade Sasser for their helpful comments on earlier drafts of this paper. Thanks are also due to the two anonymous reviewers who offered fruitful comments and suggestions. Earlier drafts of this paper were presented at the 2011 annual meeting of the Society for Social Studies of Science (Cleveland, OH) and the 2012 annual meeting of the American Sociological Association (Denver, CO).