Stephen Zavestoski

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.

Democracy and the Environment on the Internet Electronic Citizen Participation in Regulatory Rulemaking

We hypothesize that recent uses of the Internet as a public-participation mechanism in the United States fail to overcome the adversarial culture that characterizes the American regulatory process. Although the Internet has the potential to facilitate deliberative processes that could result in more widespread public involvement, greater transparency in government processes, and a more satisfied citizenry, we argue that efforts to implement Internet-based public participation have overlaid existing problematic government processes without fully harnessing the transformative power of information technologies. Public comments submitted in two United States Department of Agriculture (USDA) rulemaking processes—the National Organic Program’s organic standard and the Forest Service’s Roadless Area Conservation Rule—compose our data. We conclude that the Internet provides an arena for playing out three types of conflicts that have long plagued environmental decision-making processes: conflicts over trust of federal agencies, the use of science, and the role of public values.

Democracy and E-Rulemaking: Web-Based Technologies, Participation, and the Potential for Deliberation

Abstract Deliberative democratic theorists and public participation scholars have become increasingly interested in institutionalized forms of citizen discourse with the state, including those facilitated by information technology. However, there have been very few empirical studies of the claims that the Internet will make public participation more inclusive and deliberative. We report the results of an exploratory survey of 1,556 citizen participants in regulatory public comment processes in the United States. Our analysis focuses on the differences in deliberative indicators between those who submitted their comments using newly available electronic tools and those who postal mailed or faxed letters on paper. We also examine differences between those who submitted an original letter and those who submitted a version of a mass-mailed form letter. Overall, the data found modest evidence of the presence of deliberative democratic practices. More interesting are the apparently fundamental differences between citizens who submit original comments and those who submit form letters. We discuss the implications of these findings as they relate to the use of information technology to increase government-citizen deliberation.

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.

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.

The Internet and Environmental Decision Making

A growing number of “digital democracy” theorists (see Alexander & Pal, 1998; Hague & Loader, 1999) argue that easy and cheap access to information and participatory opportunities available through the Internet can be a boon for democracy. A more informed citizenry, the optimists report, can take advantage of the technology to enter, and expand their role in, once exclusive domains of decision making. Many democratic theorists also acknowledge the potential hazards of digital democracy, including the reproduction of inequalities through the digital divide (Malina, 1999; Wilhelm, 2000). Others point out the improbability that an already fragmented and nondeliberative populace will capitalize on information made more easily available by the Internet (Alexander & Pal, 1998). One theorist suggests that it is problematic to assume that technological innovation itself can lead to greater public control of the agenda-setting process in government (Davis, 1999). To date, there is only enough empirical evidence to suggest that many questions remain unanswered. Dimaggio, Hargittai, Neuman, and Robinson’s (2001) summary of research on the social implications of the Internet points to the split between utopians and doomsayers, with the empirical evidence so far suggesting the reality is somewhere in the middle. More important, they warned that drawing conclusions about the Internet’s democratic potential at this stage of its development and integration into decisionmaking is risky. It requires disentangling unique characteristics of early adopters from the inherent and manipulable characteristics of the Internet. It also requires parsing the limitations of the Internet in its current form from its fully developed potential (p. 319). Although the debate over the potential of the Internet as a public participation mechanism continues, the U.S. government is increasingly committing itself to Internet-based public participation strategies for the future (Clinton, 1999; National Research Council, 2000; National Science and Technology Council, 1999; President’s Information Technology Advisory Committee, 1999). For example, Senator Joseph Lieberman cosponsored the “e-Government Act of 2001,” which if passed would require federal agencies to begin conductingmuch of their business over the

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.

TOXICITY AND COMPLICITY: Explaining Consensual Community Response to a Chronic Technological Disaster

The absence of citizen mobilization following the announcement of high levels of dioxin in a New England river, and subsequent Superfund listing, is explained in light of previous research that stresses the conflict and controversy that surround community contamination. Interviews with area residents and government officials, observations of public meetings, and content analyses of newspaper articles, EPA press releases, and other official documents provide three explanations for the absence of citizen mobilization: (1) shared knowledge of the communitys industrial history meant the rivers contamination did not disrupt taken-for-granted assumptions about the community, (2) the “discovery” of the contamination by a government agency and its subsequent impression management served to defuse the public outrage that would otherwise lead to controversy and confrontation, and (3) elected officials, who were able to get resources to the agencies that could handle the problem, supported the decisions of the agencies rather than criticizing them or accusing them of negligence.

Policy Issues in Environmental Health Disputes

This article compares the state of policies concerning three different diseases/conditions with putative environmental factors: asthma, breast cancer, and Gulf War-related illnesses. By comparing the state of four different types of policies--research funding, regulations, compensation/treatment, and citizen participation--the authors demonstrate the dynamic relationship between policies and health social movements. They identify four factors that shape policy for these three diseases: the science base supporting the environmental causation hypothesis, prevalence and perception of risk, the sources of support for the environmental causation hypothesis, and the strength of health social movements. All four factors contribute to policy outcomes, but they find the strength of health social movements to be particularly important for the three diseases they examine. In some cases, social movement activity can be more important than the strength of the science base in terms of policy outcome success.