Contested Illnesses: Citizens, Science, and Health Social Movements

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The politics and science of health and disease remain contested terrain among scientists, health practitioners, policy makers, industry, communities, and the public. Stakeholders in disputes about illnesses or conditions disagree over their fundamental causes as well as how they should be treated and prevented. This thought-provoking book crosses disciplinary boundaries by engaging with both public health policy and social science, asserting that science, activism, and policy are not separate issues and showing ...

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Contested Illnesses: Citizens, Science, and Health Social Movements

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The politics and science of health and disease remain contested terrain among scientists, health practitioners, policy makers, industry, communities, and the public. Stakeholders in disputes about illnesses or conditions disagree over their fundamental causes as well as how they should be treated and prevented. This thought-provoking book crosses disciplinary boundaries by engaging with both public health policy and social science, asserting that science, activism, and policy are not separate issues and showing how the contribution of environmental factors in disease is often overlooked.

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World Medical & Health Policy Journal - Michael Lee
"[The book's] research avenues are enticing, and their case for closer examination of toxics exposure is compelling."
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Product Details

  • ISBN-13: 9780520270206
  • Publisher: University of California Press
  • Publication date: 12/26/2011
  • Pages: 352
  • Product dimensions: 6.30 (w) x 9.10 (h) x 1.10 (d)

Meet the Author

Phil Brown, founder of the Contested Illnesses Research Group at Brown University, is Professor of Sociology and Environmental Studies. He is the author of No Safe Place: Toxic Waste, Leukemia, and Community Action (UC Press). Rachel Morello-Frosch is Associate Professor in the Department of Environmental Science, Policy, and Management and the School of Public Health at the University of California, Berkeley. Stephen Zavestoski is Associate Professor in the Department of Sociology and the Environmental Studies Program at the University of San Francisco.
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Contested Illnesses

Citizens, Science, and Health Social Movements

By Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski


Copyright © 2012 The Regents of the University of California
All rights reserved.
ISBN: 978-0-520-95042-9



Environmental Justice and Contested Illnesses

Rachel Morello-Frosch, Phil Brown, and Stephen Zavestoski

Hazards are produced by business operations, to be sure, but they are defined and evaluated socially—in the mass media, in the experts' debate, in the jungle of interpretations and jurisdictions, in courts or with strategic-intellectual dodges, in a milieu of contexts. —ULRICH BECK, RISK SOCIETY, 1992

As mirror and conscience of society, sociology must define, promote, and inform public debate about deepening class and racial inequalities, new gender regimes, environmental degradation, market fundamentalism, state and non-state violence. I believe that the world needs public sociology—a sociology that transcends the academy—more than ever. Our potential publics are multiple, ranging from media audiences to policy makers, from silenced minorities to social movements. They are local, global, and national. —MICHAEL BURAWOY, "2004 PRESIDENTIAL ADDRESS: FOR PUBLIC SOCIOLOGY," 2005

During the summer of 2008, community members in Richmond, California, filed out of a packed and raucous city council meeting after being handed a major setback. Despite Herculean organizing efforts and passionate testimony by fence-line neighbors, council members had voted to approve a conditional-use permit allowing the Chevron oil refinery to increase its production capacity by refining lower-grade crude oil with a higher sulfur content, resulting in increased emissions of harmful sulfur dioxide, sulfates, and metals (Jones 2008; Baker 2007). The Richmond Chevron refinery is one of the nation's largest, covering 2,900 acres, employing a thousand workers, and processing more than 240,000 barrels of crude oil daily into gasoline, jet fuel, diesel, and lubricants (Chevron Corporation 2009a, 2009b). At the meeting, community members presented scientific data from an NIH-funded household exposure study conducted collaboratively by an independent research institute, two major universities, and a regional environmental justice organization. The data showed that refinery activities were adversely affecting indoor and outdoor air quality and that the refinery should reduce emissions, not increase them. After the meeting, one of the scientists spoke with a community organizer about whether science could play a productive role in localized, high-stakes policy decisions such as the one that had just unfolded. The organizer's assessment illuminates the potential, the limitations, and the contested role of science in struggles for environmental health and justice: "Science has its limitations, but it develops strong advocates—people can speak for themselves. The data generated supports the claims, experiences, and demands that the community members bring to the podium in policy settings. Community members can say, 'I know this because my home was tested and all these chemicals were found in my house!'"

As decisions about social policy and environmental regulation in the United States, are increasingly shaped by scientific and technocratic discourse, some communities and most industry stakeholders have used their own data and challenged scientific evidence to advance their interests. Yet the insistence on "better" science in decision making often reinforces dominant political and socioeconomic systems by slowing down policy making, precluding precautionary action, and ensuring regulatory paralysis through (over)analysis. Through this scientization of decision making, debates regarding the costs, benefits, and potential health and societal risks of new technologies and industrial production may be dominated by experts who work to ensure that battles over policy remain "objective" and divorced from their socioeconomic and political contexts. This outcome is achieved in three ways. First, questions are posed in scientific terms that may be impossible to answer scientifically, because of uncertainties in the data or the impracticality of carrying out a study. Second, political and moral questions are inappropriately framed in scientific terms, thereby limiting public participation (Weinberg 1972). Third, the scientization of decision making delegitimizes those questions that may not be amenable to scientific analysis. For example, racial, class, and transgenerational inequalities in environmental hazard exposures have been largely downplayed or ignored in the regulatory arena. All of these processes exclude the public from important policy debates and diminish public capacity to participate in the production of scientific knowledge itself.

Scientization is closely related to the perennial debate over what counts as science and what lies outside the scientific realm. This boundary is highly contested, because different actors struggle over the resources and authority associated with science. Scientists and nonscientists alike engage in what sociologists call boundary work, the active construction and contestation of the legitimacy, authority, and resources associated with the scientific enterprise (Gieryn 1983, 1999). From this boundary-work perspective, debates over scientific authority in policy making result from efforts by scientists to expand and legitimize their authority and by policy makers to use scientific authority to justify their regulatory decisions. These types of boundary work can exclude public voices from the decision-making process.

For nearly four decades, a class of social movements known as health social movements (HSMs) has challenged political power and scientific and professional authority. Examples include struggles to improve the quality of and access to health care (e.g., health insurance reform and advocacy of a single-payer health system); to eliminate persistent health inequalities based on race, ethnicity, gender, class, or sexuality (e.g., the women's health movement); and to push public health and medical institutions to address fundamental causes of disease and disability by reshaping scientific inquiry on etiology, diagnosis, treatment, and prevention (e.g., the HIV/AIDS and breast cancer movements). Historically, the emergence of HSMs focused on contested illnesses has involved scientific disputes and extensive public debates over the definition, causes, treatment, and prevention of disease. Among these, HIV/AIDS, breast cancer, and asthma HSMs have been central to promoting social and policy change; breaking new paths of scientific inquiry; and bringing attention to the politics of public health and prevention in the United States (Epstein 1996; Ferguson and Kasper 2000; Brown et al. 2004; Corburn 2005; Morello-Frosch et al. 2006). Indeed, HSMs have demonstrated that scientific knowledge is "coproduced" as government, industry, community advocates, and academic researchers all generate different forms of expert knowledge and scientific data that drive regulatory science and influence all parties (Jasanoff 2005). Furthermore, contested illness struggles highlight how regulatory science integrates scientific data and analysis with "large doses of social and political judgment" because the issues involve scientific uncertainty and contestation (Jasanoff 1990, 229; Jasanoff 1987). In short, health social movements shape and reshape science, and science in turn shapes and reshapes health social movements.

Despite the existence of a significant body of research on health social movements, the field of contested illnesses is still in its infancy. Methods for studying HSMs tend to be limited to deep ethnographic case studies of single movements or organizations. Only recently have scholars begun to examine more deeply the forces that give rise to HSMs and cross-movement coalitions focused on contested illnesses and policy goals. Moreover, little attention has been given to the collective influence that HSMs have had on scientific fact-making in public health, public policy, and regulation. This book addresses these gaps by discussing interdisciplinary research conducted by the Contested Illnesses Research Group (CIRG) on how contested illness struggles play out in three realms: the collective illness experience and movement building; scientific fact-making in public health and medical science; and policy making and regulation. We argue that the social movements emerging from contested illnesses have been catalyzed by three social forces: growing public awareness about the limited ability of medical science to solve persistent health problems that are socially and economically mediated, the rise of bioethical dilemmas in scientific knowledge production, and the collective drive to enhance democratic participation in the scientific enterprise. By using science to democratize knowledge production, contested illness struggles engage in effective policy advocacy, challenge aspects of the political economy, and transform traditional assumptions and scientific lines of inquiry regarding disease causation and prevention.


Recent contested illness struggles have moved into the realms of environmental and ecological health, as mounting scientific evidence has linked environmental and human well-being (Colborn, Dumanoski, and Myers 1996; Schettler et al. 1999). Disturbing trends in human health statistics, such as declining sperm counts, rising rates of fertility problems in young women, and increasing rates of breast, testicular, and prostate cancers suggest environmental causes (Schwartz and Woodruff 2008). The prevalence of asthma and certain neurological problems in children also appear to be on the rise (Beasley et al. 2000; Gurney et al. 2003; Newschaffer et al. 2005; Holguin 2008). Although environmental links to human disease remain hotly contested, scientific evidence strongly suggests that increasing and ubiquitous chemical exposure where we live, work, and play may partially explain these trends (Schettler et al. 1999; Landrigan et al. 2002; Grandjean and Landrigan 2006; Wilson and Schwarzman 2009). Since World War II, chemical production in the United States has increased more than twentyfold. "In 2006, more than 34 million metric tons of chemical substances were produced in, or imported into, the United States each day" (Schwarzman and Wilson 2009, 1065), and the number of chemicals registered for commercial use in the United States has increased by more than 30 percent since 1979 (Schwartz and Woodruff 2008). Many of these chemicals are showing up in our air, water, food, ecosystems, and body tissues (Morello-Frosch et al. 2009a).

For over a decade, the CIRG has focused on social movements dealing with environmental health. Its members represent the disciplines of environmental and medical sociology, science studies, environmental health science, epidemiology, and medical and environmental anthropology. (For details on the CIRG's history, see Senier et al. 2006.) With support from the National Science Foundation and the Robert Wood Johnson Foundation, the CIRG initially sought to address the lack of knowledge on health social movements related to contested illnesses and to improve understanding about the role of these struggles in reshaping scientific inquiry and pushing for policy change. Our first case studies entailed disease controversies with potential environmental links, including asthma, breast cancer, and Gulf War illness. Our work centered on understanding stakeholder struggles related to the underlying causes of these diseases—including, in the case of Gulf War syndrome, disputes over whether the veterans' physical and mental symptoms were real. Over time our analytical gaze has broadened to examine contested illnesses in domestic and global contexts and specific controversies related to medical and environmental health science, the politics of public health prevention, and regulatory decision making.

This shift has required us to expand the scope of the health social movements that we examine and rethink our ethnographic methods for studying these struggles. CIRG has moved beyond studying scientific controversies to engaging directly in the environmental health and science enterprise using communitybased participatory research (CBPR). One key premise of CBPR is that involving the communities that experience hazardous exposures and diseases can promote new lines of inquiry and analytical techniques. Further, CBPR allows substantive community participation in the research process, including formulating research questions, collecting data, and disseminating results to diverse constituencies and the scientific community (Israel et al. 1998; Minkler and Wallerstein 2003). In pursuit of this objective, CIRG began to strengthen the links between its ethnographic and scientific work and the environmental policy and regulatory goals of its community collaborators.


By collaborating with organizations that contest traditional approaches to regulatory science and environmental health policy making, we positioned ourselves to explore scientific, ethical, and political challenges in three realms: doing science, interpreting science, and acting on science. Doing science involves assessing how scientists (and sometimes their community collaborators) choose research topics, conduct research, collect data, and manage their relations with funding institutions and support organizations. It also incorporates the study of how government and nongovernment organizations shape the funding and directions of scientific inquiry. Interpreting science involves examining the ways scientists make sense of data, assess how study results fit with existing bodies of knowledge, and develop qualitative and quantitative criteria for standards of proof. Acting on science relates to advocacy and organizing; it also encompasses the dissemination of new scientific results through peer review, the media, government agencies, and the general public in order to gain the support of scientific colleagues and decision makers to improve policy making. This triad model uncovers complex paradigm shifts in scientific and community knowledge production by integrating community and expert knowledge and qualitative and quantitative methods (Brown et al. 2006).

CIRG's decision to collaborate on scientific work and policy advocacy with some of the groups we were studying may seem unconventional. Yet this form of public engagement has deep roots in both public health (Gottlieb 2005; Corburn 2007) and sociology (ASA 2005). CIRG's transition from observer to participant-observer has enabled us to examine contested illnesses by assessing the effectiveness of different scientific methods for answering regulatory and policy questions (e.g., assessment and reduction of exposure to pollutants versus epidemiologic studies searching for definitive links between pollution and disease). We also moved from observer to participant status by engaging in the politics of regulatory science with diverse constituencies at multiple sites (e.g., sites of industrial production, sites of household product consumption, and sites of chemical persistence in environmental justice communities) (Altman 2008).

Our collaboration on a scientific project with community organizations was initially motivated by our study of the environmental breast cancer movements in Massachusetts and the San Francisco Bay Area and our long-term collaborative relationships with environmental justice advocates in California. This CBPR project entailed a partnership among three entities: CIRG; Silent Spring Institute, a research institute that examines links between women's health and the environment; and Communities for a Better Environment (CBE), an organization that combines science, litigation, policy advocacy, and community organizing to address environmental justice in California. With funding from the National Institute of Environmental Health Sciences (NIEHS) Environmental Justice Grants Program, our collaborative launched the Northern California Household Exposure Study in neighborhoods bordering an oil refinery and major transportation corridors in Richmond and in a comparison community, Bolinas, in rural Marin County. The project brought together the breast cancer advocacy and environmental justice communities by conducting a household exposure study that measured endocrine-disrupting compounds (EDCs) and other contaminants in household dust, indoor air, and outdoor air. The chemicals of interest to environmental justice advocates included urban air pollutants, industrial chemicals, and pesticides to which low-income minority populations are disproportionately exposed (Morello-Frosch and Shenassa 2006). Some of these compounds have also been linked to asthma, premature puberty, obesity, and cognitive development problems (Gold et al. 2005; Carpenter 2008; Holguin 2008). EDCs from sources ranging from consumer products to industrial processes are also a central concern for breast cancer activists, because many EDCs mimic the human hormone estrogen, a known risk factor for breast cancer (Brody et al. 2007b; Rudel et al. 2007). EDCs are also emerging as a health equity concern because of the disproportionately high breast cancer mortality among African American and poor women (still largely unexplained), as well as rising rates of breast cancer among some immigrant groups (Deapen et al. 2002; American Cancer Society 2007; Baquet et al. 2008).


Excerpted from Contested Illnesses by Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski. Copyright © 2012 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

List of Illustrations Acknowledgments List of Abbreviations

Part One. Setting the Stage: Introduction, Theory, Methods
1. Introduction: Environmental Justice and Contested Illnesses Rachel Morello-Frosch, Phil Brown, and Stephen Zavestoski

2. Embodied Health Movements Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski, Sabrina McCormick, Brian Mayer, Rebecca Gasior Altman, Crystal Adams, Elizabeth Hoover, and Ruth Simpson

3. Qualitative Approaches in Environmental Health Research Phil Brown

4. Getting into the Field: New Approaches to Research Methods Phil Brown, Rachel Morello-Frosch, and Stephen Zavestoski

5. Environmental Justice and the Precautionary Principle: Air Toxics Exposures and Health Risks among Schoolchildren in Los Angeles Rachel Morello-Frosch, Manuel Pastor, and James Sadd

Part Two. Working in the Environmental Health Field: Ethnographic Studies
6. A Narrowing Gulf of Difference? Disputes and Discoveries in the Study of Gulf War-Related Illnesses Phil Brown, Stephen Zavestoski, Alissa Cordner, Sabrina McCormick, Joshua Mandelbaum, Theo Luebke, and Meadow Linder

7. The Health Politics of Asthma: Environmental Justice and Collective Illness Experience Phil Brown, Brian Mayer, Stephen Zavestoski, Theo Luebke, Joshua Mandelbaum, Sabrina McCormick, and Mercedes Lyson

8. Pollution Comes Home and Gets Personal: Women's Experience of Household Chemical Exposure Rebecca Gasior Altman, Rachel Morello-Frosch, Julia Green Brody, Ruthann A. Rudel, Phil Brown, and Mara Averick

9. The Personal Is Scientific, the Scientific Is Political: The Public Paradigm of the Environmental Breast Cancer Movement Sabrina McCormick, Phil Brown, Stephen Zavestoski, and Alissa Cordner

10. School Custodians and Green Cleaners: Labor-Environmental Coalitions and Toxics Reduction Laura Senier, Brian Mayer, Phil Brown, and Rachel Morello-Frosch

11. Labor-Environmental Coalition Formation: Framing and the Right to Know Brian Mayer, Phil Brown, and Rachel Morello-Frosch

12. The Brown Superfund Research Program: A Multistakeholder Partnership Addresses Problems in Contaminated Communities Laura Senier, Benjamin Hudson, Sarah Fort, Elizabeth Hoover, Rebecca Tillson, and Phil Brown

Part Three. Ethical Considerations
13. Toxic Ignorance and the Right to Know: Biomonitoring Results Communication; A Survey of Scientists and Study Participants Rachel Morello-Frosch, Julia Green Brody, Phil Brown, Rebecca Gasior Altman, Ruthann A. Rudel, Carla Pérez, and Alison Cohen

14. IRB Challenges in Community-Based Participatory Research on Human Exposure to Environmental Toxics: A Case Study Phil Brown, Rachel Morello-Frosch, Julia Green Brody, Rebecca Gasior Altman, Ruthann A. Rudel, Laura Senier, Carla Perez, and Ruth Simpson

15. Conclusion Phil Brown, Rachel Morello-Frosch, and Stephen Zavestoski

Appendix: Contested Illnesses Research Group's Nuts and Bolts and Lessons Learned Laura Senier, Rebecca Gasior Altman, Rachel Morello-Frosch, and Phil Brown

References List of Contributors Index

For additional appendixes, see

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    "I'll see you tomorrow, honey," Mom says, clomping dangerously up the porch steps to hug me. I try to breath through her busty cleavage. "Umm, yeah," I gasp, pulling away without too much force. "Okay." "Have fun," she nods, and I smile weakly before hurrying to their car, a sleek silver Elanda. "That was a shocker," I say, only now blinking for the first time. I manage a quick glimpse at my own chest. I'm actually small in comparison, and I've never regreted it. "You're telling me," Lainey laughed, buckling herself in. Her father pulls out, and nervously looks over into the rear view mirror. He's a math teacher, the dorky, geeky type that is just adorable to watch. "What..what's the occasion?" He asked, pushing his glasses up his nose. "," I say, looking down at my open hands. Lainey snorts, and we all burst out laughing. My mother was never good at dates, not even for dad. I've told Lainey and her family numerous times that I think dad took pity on her. "Dad, Lulu's house is up there," Lainey suddenly says, pointing out a well-to-do neighborhood on top of a grassy hill. My eyes grow wide, as they do everytime I see Lucy Somerset's home. In my eyes, it's pretty much a mansion. Her parents are both doctors, and as large and grand as her house is, I wouldn't give up mine for the world. "Should we get her or-" I begin, but I don't have to finish. Lulu is already beaming, running outside with two large bags, one for her camera, and the other a duffel for her clothes and other needs. She quickly throws them inside, almost crushing my knees, and smothers us in a hug, squishing me in the middle. "What's up, my bffs?" She asks happily, releasing us to gasp for air. "Just...picking up a friend," Lainey replies, hand on her chest. Me and Lulu giggle, then we all laugh again. My life has been so serious, it feels good to laugh. I need to do this more often. "Glad you could join the crew," her dad says as we pull away from the fancy houses. "Yeah, I am so looking forward to a relaxing mani/pedi," Lulu sighs, finally sinking back into the leather seat. "Same here," I agree with a high five. "Well, it will be Mrs. Harris taking you girls to the mall, not me," her dad states. "Thank god," Lainey mutters and I smile and nudge her while Lulu giggles again. I start to grab my things when Mr. Harris stops me. Me and Lulu thank him, then we all rush inside. I almost immediately begin to trip over Lainey's black cat, who darts out right under my foot. Luckily, they had a stair railing to catch me. "Bad Licorice," Lainey scolds, picking her up. I can tell she doesn't mean it though, because Licorice is purring loudly and Lainey is kissing her.

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