Citizen-Science Alliances in Contested Environmental Diseases

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This project examines citizen-science alliances that deal with "contested illnesses" that involve major scientific disputes and extensive public debates over environmental causes. Focusing on three major disputes -- Gulf War Syndrome, small air particles and asthma, and environmental factors in breast cancer - this project examines research collaborations between laypeople and scientists, either as individual scientists or as part of research groups or institutes, that identify, determine causes of, and plan remediation of, contested environmental illnesses. For each area, this project will examine the following questions: 1) How do laypeople decide they need science allies and seek them out? 2) Where are allies found? 3) How do scientists who serve as allies think about their role? 4) How successful are the processes and outcomes of citizen-science alliances? 5) Do science allies face discouragement, condemnation, or bias as a result of their activities? 6) Should policymakers and regulatory agencies create new organizational contexts, based on laypeople's experiences, that will provide science allies? Data include state and federal government documents involved in setting up the Long Island Breast Cancer study, the Silent Spring Institute, the Massachusetts Toxic Use Reduction Institute, and the VA-sponsored Gulf War research centers, as well as EPA documents on its small air particles conference. Interviews will be conducted with citizen activists, scientists, and government officials involved in the three contested illnesses, as well as with researchers at organizations that provide various forms of research aid to citizens. Site-based observation will be carried out at Silent Spring Institute (breast cancer), Boston Environmental Hazard Center (Gulf War illnesses), Action for Community and Environment (asthma), and Toxic Use Reduction Institute. Results will expand existing knowledge of public participation in science and of transformations in scientific methods. By understanding public reactions, policy makers can be prepared for similar issues in the future. This project includes substantial support for graduate students to assist with this component of the research, which is part of a related larger project funded by the Robert Wood Johnson Foundation. Results will be reported at meetings and in journals; a book is also planned.