A Body’s Burden: Advocacy Based Biomonitoring
Studies
Senior Honors Thesis, AB Environmental Studies
May 2006
Biomonitoring has brought the field of environmental health from population-wide epidemiological inquiries testing soil, water, and air to the personal, individually specific realm of the human body. Scientific advancements over the past few decades have made it possible to measure low levels of exposure to chemicals in samples drawn from body tissues and household dust. These testing techniques, known as biomonitoring, allow for detection of exposures before a health outcome is present, and the reporting of individually specific information on chemical body burdens. An individual participant can have his blood, breast milk, hair, or urine tested for several chemicals at the same time, from pesticides to phthalates. In most cases, the participant later receives a report detailing the concentration of each chemical found in his/her body, usually accompanied by a description of the average amounts for each chemical in the population tested. Using this technique, chemical contamination is illuminated in the most intimate spaces of people’s lives.
In addition to radically shifting the locus of inquiry in environmental health, the increasing availability and sophistication of biomonitoring and household sampling technology has also taken public health work outside of academia and into the community. In recent years, several environmental organizations and community groups have initiated their own studies, with the goal of producing evidence of contamination to further policy agendas or to increase public awareness of toxic chemical contamination. These groups base decisions regarding recruitment of participants, selection of chemicals, and style of publication on the goal of maximizing the study’s value as an activist tool. This paper examines how such decisions are made by advocacy organizations conducting biomonitoring studies, and how the prioritization of activist concerns alters the ethics of such studies.
These advocacy based biomonitoring studies also create an ideal setting for reexamining the individual participant’s experience of enrolling in an environmental health study. The experience of participating in a biomonitoring study conducted by an advocacy organization has large and far-reaching effects on the lives of the participants. The principle of participant confidentiality is rendered irrelevant by the expectation that study participants will publicly communicate their personal exposure results. Their data and personal information are thrust into the public view, and they are often asked at the outset to represent the organization conducting the study in press conferences or other events, although they are given permission to later decide to keep their results confidential. Their test results are often leveraged for broader policy goals, with their contamination levels referenced as emblematic of the need for reform. Through participating in this type of study, these individuals are integrated into the broader toxics reduction movement. Indeed, through their participation in advocacy based biomonitoring studies, the personal is made political, and their own bodies are the arenas for action.
The process that participants go through to understand their results is also unique in this context. The data disseminated in these studies has a high level of personal specificity, with individual-level results given out, sometimes for several hundred different chemicals. However, this data has little contextual meaning, with no national averages available for many of the chemicals monitored and little scientific understanding of the potential health implications of exposure on an individual level. Participants in advocacy exposure studies thus face the burden of contextualizing the information on their own in order to be able to derive meaning from the data without scientific consensus about what such information might mean about their health. Through a series of interviews with study participants, this paper examines how advocacy based biomonitoring studies alter the experience of participating in a health study.
The three research questions driving this study are:
1. How do advocacy based biomonitoring
studies represent a new field of scientific inquiry in which activism and
scientific research intersect?
2.
How does the experience of
participating in grassroots body burden studies blend a private embodied
experience with public activism efforts?
3. How do participants in advocacy based biomonitoring studies come to understand their results, and how does the experience of learning one’s personal body burden affect the way individuals think and act on environmental health issues?
This report begins by briefly reviewing the
methods used in this project, providing an overview of the sample of
individuals interviewed, and providing definitions of terms used in the
project. This section is followed by a
background section providing information on the history of biomonitoring
and its adoption by activst organizations. Following the background section is an
analysis of the appeal of biomonitoring for advocacy
organizations. Next, the results section
of the report will answer the three research questions listed above, followed
by a critique of advocacy based biomonitoring and a
conclusion.