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

Georgia Tech Research Corporation, Atlanta GA

Investigators

Abstract

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?