Citizen-Science Alliances in Contested Environmental Diseases

这个项目考察了公民-科学联盟，这些联盟处理涉及重大科学争议和关于环境原因的广泛公共辩论的“有争议的疾病”。该项目聚焦于三个主要争议--海湾战争综合症、微小空气颗粒和哮喘以及乳腺癌的环境因素--考察了普通人和科学家之间的研究合作，无论是作为科学家个人，还是作为研究小组或研究所的一部分，识别、确定有争议的环境疾病的原因并计划补救措施。对于每个领域，本项目将研究以下问题：1)外行人如何决定他们需要科学盟友并找到他们？2)在哪里找到盟友？3)作为盟友的科学家如何看待他们的角色？4)公民-科学联盟的过程和结果有多成功？5)科学盟友的活动是否会受到打击、谴责或偏见？6)政策制定者和监管机构是否应该根据外行人的经验创造新的组织环境，以提供科学盟友？数据包括州和联邦政府参与建立长岛乳腺癌研究、寂静之春研究所、马萨诸塞州有毒物质使用减少研究所和退伍军人管理局赞助的海湾战争研究中心的文件，以及环保局关于其小空气颗粒会议的文件。采访将涉及三种有争议的疾病的公民活动家、科学家和政府官员，以及向公民提供各种形式研究援助的组织的研究人员。现场观察将在寂静之春研究所(乳腺癌)、波士顿环境危险中心(海湾战争疾病)、社区与环境行动(哮喘)和减少有毒物质使用研究所进行。成果将扩大公众参与科学和科学方法变革的现有知识。通过了解公众反应，政策制定者可以为未来类似的问题做好准备。该项目包括为研究生提供大量支持，以协助研究的这一部分，这是由罗伯特·伍德·约翰逊基金会资助的一个相关更大项目的一部分。结果将在会议和期刊上报告；还计划出版一本书。

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.