Sabrina McCormick

Print media coverage of environmental causation of breast cancer

Given the growing concern with breast cancer as a largely unexplained and common illness of our time, we would expect considerable print media coverage. An accurate portrayal of breast cancer would also include a good amount of attention to the potential environmental factors since many women with breast cancer and activists are pointing to such potential causes. Our examination of daily newspapers, newsweeklies, science periodicals, and women’s magazines showed that there was little coverage of possible environmental causation. There was also scant attention paid to corporate and governmental responsibility. Articles often focused on individual responsibility for diet, age at birth of first child, and other personal behaviours. Articles also emphasised genetic causation, even though this explained only a small fraction of breast cancer incidence. These factors combine to place personal responsibility on women for preventing the disease. Despite gains in understanding possible environmental causation and much scientific dialogue about it, especially in light of the endocrine disrupter hypothesis, and despite growing social activism, the print media have not paid much attention to environmental causation of breast cancer. Because the media have significant influence over public understanding and social action, this lack of attention may hold back scientific and activist pursuit of environmental causes of breast cancer.

“A Lab of Our Own” Environmental Causation of Breast Cancer and Challenges to the Dominant Epidemiological Paradigm

There are challenges to the dominant research paradigm in breast cancer science. In the United States, science and social activism create paradigmatic shifts. Using interviews, ethnographic observations, and an extensive review of the literature, we create a three-dimensional model to situate changes in scientific controversy concerning environmental causes of breast cancer. We identify three paradigm challenges posed by activists and some scientists: (1) to move debates about causation upstream to address causes; (2) to shift emphasis from individual to modifiable societal-level factors beyond an individual’s control; and (3) to allow direct lay involvement in research, which may raise new questions and change how questions are approached, the methods used, and the standards of proof. We use our model to examine controversies about doing scientific research, interpreting scientific results, and acting on science. Ultimately, we aim to understand what impedes construction of new methodologies and knowledge about environmental factors in human disease.

Public Involvement in Breast Cancer Research: An Analysis and Model for Future Research

Public involvement in health program planning has been taking place for many years, and has provided a precedent for the emergence of public involvement in research conducted since the early 1990s. Such involvement is now widely seen in breast cancer research, due to the large public concern and major social movement activity. This article reviews current practices and general models of public involvement in research and constructs a prototype. The authors interviewed researchers, program officers, and laypeople in order to understand the obstacles, processes, and benefits. They conclude that public involvement has major ramifications for the democratization of science and the construction of knowledge by teaching lay people about science and sensitizing researchers to concerns of the public. There is growing support on the part of scientists and government agents for public involvement.

The Brazilian Anti-Dam Movement Knowledge Contestation as Communicative Action

The environmental movement has often contested and reshaped scientific knowledge to achieve its goals. However, theorists have yet to account for this social movement tactic. This research uses a case study of the anti-dam movement in Brazil, with particular reference to three instances of anti-dam activism across the country, to delineate how scientization of the state motivates environmental movements to contest science. It uses Jurgen Habermass theory of communicative action to explicate how instrumental and communicative claims are deliberated on in collaborations between activists and researchers, resulting in new scientific conceptualizations. These results are then translated to the public through innovative movement frames. This research helps situate communicative action as a social movement strategy important in a global knowledge society.

Science, Policy, Activism, and War: Defining the Health of Gulf War Veterans:

Many servicemen and women began suffering from a variety of symptoms and illnesses soon after the 1991 Gulf War. Some veterans believe that their illnesses are related to toxic exposures during their service, though scientific research has been largely unable to demonstrate any link. Disputes over the definition, etiology, and treatment of Gulf War-related illnesses (GWRIs) continue. The authors examine the roles of science, policy, and veteran activism in developing an understanding of GWRIs. They argue that the government’s stress-based explanation of GWRIs and its insistence on a scientific link between service in the gulf and veteran illnesses forced veterans to shift from pleas for care, treatment, and compensation on moral grounds to engagement in the scientific process and debates over the interpretation of scientific findings. The authors compare the experiences of veterans to those of breast cancer activists to explain the stages of illness contestation in general.

After the Cap: Risk Assessment, Citizen Science and Disaster Recovery

I used the 2010 Deepwater Horizon oil spill to examine how crowdsourcing is used as a new form of citizen science that provides real time assessments of health-related exposures. Assessing risks of an oil spill, or disasters more generally, is a challenge complicated by the situated nature of knowledge-generation that results in differential perceptions and responses. These processes are critical in the case of the British Petroleum spill in the Gulf Coast since the identification of risks promises to have ramifications for multiple social actors, as well as the health status and long-term resilience of communities in the area. Qualitative interviews, ethnographic observations, and video data were collected with local social movement organizations, grassroots groups, spill workers, fisherman, local residents, scientists, and government representatives within five months of the spill. Findings suggest that crowdsourcing is a new form of citizen science reflecting a transition from lay mapping to an online data gathering system that allows a broader range of participation and the detection of a broader range of impacts. Outcomes of this research promise to help demonstrate and theorize how citizen science relates to risk assessment processes and affects disaster recovery and long-term response.

The Governance of Hydro-electric Dams in Brazil

This paper examines the governance of hydroelectric dam planning in Brazil with a particular focus on two factors: first, governmental institutions that aim to provide participatory mechanisms for civil society, and second, new participatory institutions created by civil society to remedy the lack of meaningful participatory measures. One example of the latter are new collaborative research projects, which have changed dam building policies and governmental thinking about participation. It is argued here that these kinds of collaboration are fundamental to making dam-building policy more accountable to local citizens. The analysis demonstrates that lay/expert collaborations provide pathways through which affected people can contest inaccurate official scientific reports, in turn influencing the policy process. I examine six such participatory projects across the country: four are nationally based and two are international in scope. A four-pronged typology is used to analyse the processes and outcomes of these collaborations. This typology reveals multiple types of knowledge-sharing that constitute concrete means to implement participation in environmental policy, hence advancing the democratisation of environmental governance.

Mobilizing Science: Movements, Participation and the Remaking of Knowledge

Introduction 1. Democratizing Science Movements: Conditions for Success and Failure 2. The Environmental Breast Cancer Movement and the Scientific Basis for Contestation 3. Dam Impacts and Anti-dam Protest 4. Government Institutions and Corporate Interests: Instigating Movement Challenge 5. Democratizing Science 6. Democratizing Science as a Mechanismof Co-optation 7. Long- Term Struggles and Uncertain Futures 8. A Case for Making Science Accountable Contributors Appendix References Index

Clearing the air and breathing freely: The health politics of air pollution and asthma

This study examines the growing debate around environmental causes of asthma in the context of federal regulatory disputes, scientific controversy, and environmental justice activism. A multifaceted form of social discovery of the effect of air pollution on asthma has resulted from multipartner and multiorganizational approaches and from intersectoral policy that deals with social inequality and environmental justice. Scientists, activists, health voluntary organizations, and some government agencies and officials have identified various elements of the asthma and air pollution connection. To tackle these issues, they have worked through a variety of collaborations and across different sectors of environmental regulation, public health, health services, housing, transportation, and community development. The authors examine the role of activist groups in discovering the increased rates of asthma and framing it as a social and environmental issue; give an overview of the current knowledge base on air pollution and asthma, and the controversies within science; and situate that science in the regulatory debate, discussing the many challenges to the air quality researchers. They then examine the implications of the scientific and regulatory controversies over linking air pollution to increases in asthma. The article concludes with a discussion of how alliances between activists and scientists lead to new research strategies and innovations.

Gender, embodiment, and disease: Environmental breast cancer activists' challenges to science, the biomedical model, and policy

STEPHEN ZAVESTOSKI, SABRINA McCORMICK ANDPHIL BROWNAs developed and developing societies increasingly alter their naturalenvironments by introducing chemical and other industrial by-prod-ucts, disease-based social movements aiming to link various diseasesto environmental causes are becoming more common. The burdenof scientific proof, among other factors, poses a significant challengeto these movements. We illustrate how gender identity serves both toconstrain and enable activists in the environmental breast cancermovement (EBCM). We highlight how the EBCM’s attempt toemphasize possible environmental causes of breast cancer forces themovement to challenge the medical and popular explanations ofbreast cancer—what we call the dominant epidemiologicalparadigm—that point to personal lifestyle and genetics. The conceptof the dominant epidemiological paradigm provides an analyticalframework for exploring how gender concerns are central to environ-mental breast cancer activists’ efforts to link breast cancer to en-vironmental causes. It also provides a framework to see how genderdiscrimination gets institutionalized, and how activists respond tothat institutionalized discrimination by employing tactics that oftencentre on gender-based issues.The dominant epidemiological paradigm of breast cancer, whichis largely supported by the mainstream breast cancer movement,focuses on individual-level approaches to stopping breast cancer.