What Difference Does it Make? Citizen-Scientist Collaborations and the Quest for Environmental Solutions to æthe 'Breast Cancer Epidemic'

它有什么区别？

• 批准号: 0324740
• 负责人: Maren Klawiter
• 金额: $ 2.5万
• 依托单位: Georgia Tech Research Corporation
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-09-01 至 2004-11-30
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=0324740&HistoricalAwards=false
• 关键词: What; Difference; Does; Make; Citizen

Beginning in the 1980s and accelerating during the nineties, the social contract between science, the citizenry, and the state that was put into place during the Cold War era (Kleinman 2000) began to unravel, the frayed ends tugged and pulled by a variety of new social actors.the environmental and environmental justice movements, the consumer rights movement, AIDS activism, breast cancer activism, and a host of other new social movements. Not content with their role as mere cheerleaders or naysayers, nor with their confinement to the sidelines of science, these new social movements claimed a new set of entitlements and positioned themselves as legitimate stakeholders in the arenas of scientific research and policy-making. Deeply enmeshed within these practices, a .new breed of lay-experts. (Epstein 2000) and.citizen-scientists. (Schneider 2000) emerged as both cause and consequence. One of the most interesting and important arenas in which these processes have been unfolding is the U.S. breast cancer movement. When the breast cancer movement burst onto the national political scene in the early 1990s, it was the National Breast Cancer Coalition and its biomedical research agenda that captured the politicians' and the public's attention. Outside the biomedical parameters of the debate set by the NBCC, however, the environmental wing of the breast cancer movement flourished in three major geographical settings: Long Island, New York; Massachusetts; and the San Francisco Bay Area. In the San Francisco Bay Area, the synthesis of environmental justice and breast cancer activism produced a slew of new campaigns, organizations, and coalitions (Klawiter 1999a). Some of these groups and organizations deliberately sought alliances with the scientific research community; others deliberately eschewed such alliances. Marin United Against Breast Cancer (not their real name), the focus of this proposal, adopted the former strategy. Marin United Against Breast Cancer (MUABC) was formed in 1995, in response to a report published by the Northern California Cancer Center indicating that women in the San Francisco Bay Area had the highest rate of breast cancer in the world, and that women in Marin had the highest rate of breast cancer in the San Francisco Bay Area (Northern California Cancer Center 1994). The first months of MUABC's meetings were conducted in each other's living rooms and had the feel of an environmental consciousness-raising group. By the year 2000, MUABC had become a savvy participant in scientific research, collaborating, consulting, and partnering with university epidemiologists and government scientists on a number of funded research projects. But how exactly did this happen? How, for example, did the ambition to discover the environmental causes of breast cancer and "end the epidemic" get translated into a series of publicly-funded scientific studies? What was the process of translation? This is a story, on the one hand, about the "democratization of science" by activists (Kleinman 2000), but it is also, at the same time, a story about the disciplining and domestication of activism by science. Exploring and explaining these dual tendencies represents the main task and the intellectual merit of the research project here proposed. The P.I. for this project possesses an original set of in-depth ethnographic data on Marin United Against Breast Cancer, gathered over a period of three years (between 1995 and 1998), and based on extensive participant-observation, supplemented by interviews, minutes from meetings, and other documents related to the organization's development. In short, the P.I. has a wealth of data that remains largely untouched and unanalyzed. The P.I. proposes that funding for this project be used to: gather additional information and conduct a series of follow-up interviews with key figures in the scientific research projects undertaken by Marin United Against Breast Cancer; explore the feasibility of a larger study of citizen-scientist collaborations; integrate the new material with earlier ethnographic data and conduct a preliminary analysis of the entire set of data; present preliminary findings at the annual meeting of the 4S. Broader Impacts: The social and practical implications of this work are also significant: (a) for women, who are under-represented in the field of science and technology and who are also, obviously, the group most at risk of developing breast cancer; (b) for other groups of people with illnesses and disabilities that they believe may be related to involuntary exposures to environmental toxins (e.g., Vietnam veterans exposed to Agent Orange, veterans of the Persian Gulf War who developed Gulf War Illness, parents of children with asthma, people with Chemical Sensitivity Disorder, etc.). Many of these groups are beginning to enter (or have already entered) the domain of scientific research and policy-making. What are the pitfalls? What are the possibilities? What can they learn from the experiences of other groups? In the background of these important social issues, but in many ways foregrounding these questions, there remains the larger, and largely unanswered, question: What is the relationship between democracy and science? How is it changing? And what should it be?

从 20 世纪 80 年代开始，并在 90 年代加速，冷战时期（Kleinman 2000）建立的科学、公民和国家之间的社会契约开始瓦解，磨损的末端被各种新的社会行动者拉扯。环境和环境正义运动、消费者权利运动、艾滋病激进主义、乳腺癌激进主义和许多其他新的社会运动。 这些新的社会运动不满足于仅仅充当啦啦队长或反对者的角色，也不满足于将自己局限于科学的边缘，它们主张一套新的权利，并将自己定位为科学研究和政策制定领域的合法利益相关者。 新一代的外行专家深深地融入了这些实践。 （Epstein 2000）和公民科学家。 （Schneider 2000）的出现既是原因也是结果。这些过程展开的最有趣和最重要的领域之一是美国乳腺癌运动。 当乳腺癌运动在 20 世纪 90 年代初突然出现在国家政治舞台时，全国乳腺癌联盟及其生物医学研究议程吸引了政客和公众的注意力。 然而，在 NBCC 设定的生物医学辩论范围之外，乳腺癌运动的环保派在三个主要地理环境中蓬勃发展：纽约长岛、纽约州长岛、马萨诸塞州；和旧金山湾区。 在旧金山湾区，环境正义和乳腺癌激进主义的综合产生了一系列新的运动、组织和联盟（Klawiter 1999a）。 其中一些团体和组织有意寻求与科学研究界结盟；其他人则故意回避这种联盟。 该提案的焦点马林联合抗击乳腺癌（化名）采用了前一种策略。马林抗乳腺癌联盟 (MUABC) 成立于 1995 年，是为了响应北加州癌症中心发表的一份报告，该报告指出旧金山湾区的女性乳腺癌发病率是世界上最高的，而马林的女性乳腺癌发病率是旧金山湾区最高的（北加州癌症中心 1994 年）。 MUABC 会议的头几个月是在彼此的客厅里进行的，给人一种环保意识提高小组的感觉。 到 2000 年，MUABC 已成为科学研究的精明参与者，与大学流行病学家和政府科学家在许多资助的研究项目上进行合作、咨询和合作。但这到底是怎么发生的呢？ 例如，发现乳腺癌的环境原因和“结束流行病”的雄心是如何转化为一系列公共资助的科学研究的？翻译的过程是怎样的？ 一方面，这是一个关于活动家“科学民主化”的故事（Kleinman 2000），但同时，它也是一个关于科学对活动主义的规训和驯化的故事。 探索和解释这些双重倾向代表了这里提出的研究项目的主要任务和智力价值。 P.I.该项目拥有一套关于马林联合抗击乳腺癌的原始深入人种学数据，这些数据在三年期间（1995 年至 1998 年间）收集，基于广泛的参与者观察，并辅以访谈、会议记录和其他与该组织发展相关的文件。 简而言之，P.I.拥有大量未被触及和分析的数据。 P.I.建议将该项目的资金用于：收集更多信息并对马林联合抗乳腺癌科学研究项目的关键人物进行一系列后续采访；探索对公民科学家合作进行更大规模研究的可行性；将新材料与早期的人种学数据相结合，并对整套数据进行初步分析；在 4S 年会上公布初步调查结果。更广泛的影响：这项工作的社会和实际影响也很重要：(a) 对于女性来说，她们在科学技术领域的代表性不足，而且显然也是最容易患乳腺癌的群体； (b) 对于他们认为可能与非自愿接触环境毒素有关的其他疾病和残疾人群（例如，接触橙剂的越南退伍军人、患上海湾战争病的波斯湾战争退伍军人、哮喘儿童的父母、化学过敏症患者等）。 其中许多群体正在开始（或已经进入）科学研究和政策制定领域。 有哪些陷阱？ 有哪些可能性？ 他们可以从其他群体的经验中学到什么？ 在这些重要的社会问题的背景下，但在许多方面都突出了这些问题，仍然存在一个更大的、基本上尚未得到解答的问题：民主与科学之间的关系是什么？ 变化如何？ 应该是什么？