Community-initiated breast cancer and environment studies and the precautionary principle

The precautionary principle implies the need for research paradigms that contribute to "strength of the evidence" assessments of the plausibility of health effects when scientific uncertainty is likely to persist and prevention is the underlying goal. Previous discussions of science that inform precautionary decision making are augmented by examining three activist-initiated breast cancer and environment studies--the Long Island, New York, and Cape Cod, Massachusetts, studies and the National Institute of Environmental Health Sciences breast cancer and environment centers. These studies show how the choice of research questions affects the potential of results to inform action. They illustrate a spectrum of public involvement, population- and individual-level epidemiologic study designs, and the crucial importance of developing and applying new exposure assessment methods. The exposure studies are key because they are critical in assessing plausibility (without exposure to a causal agent, there is no health effect), are prerequisite to health studies, and identify preventable exposures that could be reduced by precautionary policies, even in the absence of strong evidence of harm. The breast cancer studies have contributed to environmental and biological sampling programs for endocrine-disrupting compounds in drinking water and household air and dust and the application of geographic information systems for surveillance and historical exposure assessment. They leave unanswered questions about when to invest in large epidemiologic studies, when negative results are sufficient, and how to pursue ambiguous positive results in further research and policy.