Brown Universidy

Contested Illnesses Research Group
Brown University , Providence RI

Home | Research Projects | Publications | People | Links | Resources | Contact Us

Citizen-Science Alliances in Contested Environmental Diseases

This project examined citizen-science alliances that dealt with "contested illnesses," or conditions that involved both major scientific disputes and extensive public debates over environmental causes. Focusing on three major disputes -- Gulf War Illnesses, small air particles and asthma, and environmental factors in breast cancer -- this project examined 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.This project was guided by the following questions:
  1. How do laypeople decide they need science allies and then seek them out?
  2. Where are science allies found?
  3. How do scientists who serve as science allies think about their role?
  4. How successful are the processes and outcomes of citizen-science alliances?
  5. Do scientists who serve as 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 included state and federal government documents used to establish 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. In addition, the project staff conducted semi-structured interviews 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. Ethnographic observation was carried out at four research and advocacy organizations working in these areas: Silent Spring Institute (breast cancer), Boston Environmental Hazard Center (Gulf War illnesses), Action for Community and Environment (asthma), and Toxic Use Reduction Institute. his research has expanded our understanding of public participation in science and improved our understanding of scientific disputes over environmentally induced diseases. By understanding the background and impact of public reactions, policymakers can be prepared for similar issues in the future. Because lay discovery has played a central role in detecting and studying environmentally induced diseases, this research can help in understanding lay forms of knowledge and lay attempts to seek science allies. It also demonstrates how professionals develop their theory, knowledge, and practice in response to these illnesses, and how these professionals undergo transformations of their approaches to traditionally accepted canons of scientific methods. Finally, this examination of lay-professional disputes and collaborations may lead to scientific and technological innovation.

National Science Foundation