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Toxic Exposures: Contested Illnesses and the Environmental Health Movement
July, 2007
Cloth, 392 pages, 12 illus.
ISBN: 978-0-231-12948-0
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CITIZEN-SCIENCE ALLIANCES AND HEALTH SOCIAL MOVEMENTS: CONTESTED ILLNESSES AND CHALLENGES TO THE DOMINANT EPIDEMIOLOGICAL PARADIGM (excerpt from Chapter 1)
Many diseases and conditions involve considerable dispute. Sometimes that dispute centers on whether medicine, science, government, and business believe the disease exists. At other times, there is disagreement over the way to treat the disease and whether people have equal access to treatment. In other cases, the conflict concerns how to study the cause or exacerbation of the disease or both. When we turn to the intersection of health and the environment, we find numerous contested illnesses that involve scientific disputes and extensive public debates over environmental causes. These environmental health problems are among society's most disputed health issues.
DETERMINING ENVIRONMENTAL HEALTH PROBLEMS
What exactly is meant by environmental health problems? The fullest definition would include the totality of hazards and health effects found in our living and working conditions: bacteria and viruses in human waste; animal vectors for infectious diseases; surface-water and groundwater pollution; air pollution from fires, vehicle exhaust, and incineration; chemical and petroleum product spills and explosions; and disasters such as floods, hurricanes, landslides, and fires (which may be natural, human caused, or human exacerbated). But that definition is broad enough to encompass virtually all disease- causing factors. It is more sensible to focus on the health effects caused by toxic substances in people's immediate or proximate surroundings (soil, air, water, food, household goods), a definition that mirrors most research and policy on environmental health. These effects are chemical- and radiation-related symptoms and diseases that impact groups of people in workplaces and communities. I term them environmentally induced diseases because they are in some part caused by environmental factors, even though environmental factors may interact with genetic predispositions or with some personal behaviors.
Focusing our definition of environmental health problems on toxic substances makes sense for several reasons. Toxic exposure has engendered much conflict, policymaking, legislation, public awareness, media attention, and social movement activity. It leads to disputes between laypeople and professionals, between citizens and governments, and among professionals. Because of the pressure from activists, especially when there is a localized health crisis, research on toxic health effects has spurred research that might not otherwise be done. Furthermore, toxic exposures demonstrate interesting and ongoing examples of how people determine what are social problems and how they engage in political contestation concerning environmentally induced diseases.
To give a sense of how contentious these disputes are, it is useful to note that the federal Environmental Protection Agency (EPA) has taken more than twenty years to release a risk assessment of dioxins, even though that class of chemicals has been one of the most studied in terms of toxic effects. Consider that dioxins appear in so many forms and through so many processes—from the bleaching of virtually all the paper pulp used in paper manufacturing to the burning of all trash in incinerators, the production of many industrial and agricultural chemicals, explosions in chemical plants such as Seveso (Italy), and the spraying of Agent Orange to deforest Vietnam during the war, to offer only a few examples. The political, economic, military, and ideological implications of a definitive statement of health risks from dioxins and the tightening of regulations that would follow are tremendous—and this is only one of the many classes of toxic substances with which people are concerned.
Environmental health is so strongly contested because the hazards identified by laypeople and some scientists are crucial parts of the modern economy, and the challengers seek to level the playing field by having corporations be more responsible. In addition, environmental health activism poses a philosophical challenge by arguing for a people- centered society rather than one dominated by profit seeking without regard for consequences. This activism also criticizes the centrality of individual responsibility, preferring to locate most responsibility in the underlying social structure and social institutions (economic arrangements, power relations, government agencies, corporations, and industry associations). Further, such activism criticizes all levels of government for not adequately protecting the public, even when clearly mandated to do so.
The debates over environmentally induced diseases bear witness to important problems in our society—problems concerning health status, social inequalities, corporate involvement in both causes and cover-ups of disease, governmental responsibility for monitoring health hazards and for controlling corporate practices, and public belief that much science and technology are producing problems rather than solving them. In thinking about these issues, we need to ask: Why do certain diseases have high visibility? How are causes of disease ascertained? Why is there so much controversy over disease causation? Why are some suspected causes given more attention than others?
These questions can be only partially answered by focusing on the internal mechanisms of science and medicine. To answer them fully, we must examine the many parties involved in disputes over disease. Th is examination leads us to look at the role of social movements and lay advocacy, as well as at the interaction between lay, professional, and government worlds. We know that scientific perspectives and lay perspectives (especially activist ones) may not agree in many cases, and we must then ask: What are the implications of disagreement? How do scientific, medical, and policy communities deal with fighting disease in light of this disagreement? Who defines which diseases are most important and which toxics get addressed?
PUBLIC OPINION ON ENVIRONMENTAL CAUSATION OF DISEASE
The Pew Charitable Trusts, one of the nation's major health foundations, sponsored a project called Health-Track, subsequently renamed the Trust for America's Health. Health-Track's mission was to educate the public, the health care system, and the government about the widespread impact of environmental factors in disease and the glaring lack of a health- tracking system to monitor diseases and to push for a nationwide biomonitoring program.
As part of its overall program, Health-Track understood the need to demonstrate widespread public concern over environmental factors through a public survey, so it conducted one on April 20-30, 2000, which interviewed 1,565 men and women nationwide (with a + / -3 percent margin of error). The results are striking, as shown in table 1.1. For sinus and allergy problems and for childhood asthma, a majority of respondents felt that environmental factors play a major role, and more than 90 percent of people agreed that the environment played some role. For birth defects and childhood cancer, two recently rising categories of disease, well more than 33 percent believed in a major environmental role, and close to 90 percent believe in a major or a minor role. For breast cancer, 25 percent believed in a major role, and 39 percent in a minor role, thus giving us well more than three- quarters of those surveyed believing in an environmental role in several major health issues.
These figures are in sharp contrast to most governmental perspectives (as represented in government publications, reports, and funding allocations) and to most medical research literature, which does not place much emphasis on environmental causation. This disparity can be seen as part of a frequently observed phenomenon in which laypeople make higher estimates of risks and hazards than do professionals. There is some basis for believing that laypeople make overestimates because they do not have the same access to actual disease or mortality data as do professionals. Laypeople also overestimate dreaded outcomes, such as radiation hazards, compared to more mundane hazards such as auto accidents. These estimates are also influenced by the public's perceptions of their control over exposures (e.g., the driving of cars versus electromagnetic fields from power lines). At the same time, however, laypeople's everyday experiences may validate such overestimates. First, they are oft en the first to notice disease increases and clusters, and they often have to fight to get recognition and action. Second, they face corporate and governmental resistance to the recognition of environment health effects, making them think that there are indeed problems that have not yet been adequately acknowledged. Third, laypeople often point to environmental and occupational factors that are later found to be very accurate and that become part of the core of medical knowledge and governmental regulation. Fourth, laypeople focus on the proximate concerns they see in their everyday lives and worries.
In fact, it is likely that many of the clusters noticed by laypeople are valid observations. Rather than the problem being people's overestimates based on proximity and familiarity, perhaps it is that science simply has not yet seen the clusters identified by laypeople and has not figured out appropriate methods to quantify hazards, exposures, and clusters. Indeed, there is growing evidence that laypeople are correct. Health-Track pointed out that our society spends enormous amounts on health without the accompanying gains in health status that we see in other advanced industrial societies. One reason for this outcome is that as a society we do not do a good job of monitoring health status and the factors implicated in disease. Th e excellent health registries of Scandinavian countries enable them to track many generations of people for disease, providing high-quality methods for disaggregating genetic factors from nongenetic factors. One example of how health tracking can help is seen in the Swedish response to polybrominated diphenyl ethers (PBDEs), fire retardants that have been found in high levels in breast milk. In Scandinavian countries, data on everyone in each country are collected from cradle to grave and are centrally located and accessible to researchers. Once Swedish authorities noticed the persistent and bioaccumulative properties of PBDEs, Swedish scientists and regulators looked at longitudinal data that had been gathered from three decades of sampling breast milk to track exposure to dioxin, polychlorinated biphenyls (PCBs), and other pollutants that accumulate in body fat. Alarmed by the rapid increase in PBDE body burden, Sweden banned a number of PBDEs.
Health tracking also alerts us to the increase over time in other exposures and in diseases and conditions that are known to be or are potentially caused by environmental toxins. Supporters of monitoring in the United States seek a higher quality of research capacity, though for them higher quality mainly means better integration of data on pollution emissions and exposures, along with some health outcome surveillance information. The infrastructure to collect such data does not exist here, mainly because we do not have any centralized system of health care. Advocates of better health tracking point to the need for universal health care not only to get the centralized, systematized infrastructure that such an excellent health- tracking system would really require, but to bring our society into the modern world of health care.
The evidence for public concern extends beyond opinion poll data. Devra Davis's 2002 book When Smoke Ran Like Water: Tales of Environmental Deception and the Battle Against Pollution was nominated for the National Book Award, also signifying the popularity of such topics. Environmental contamination resonates widely with the public. We see this interest in the popularity of movies such as Erin Brokovich (2000, starring Julia Roberts as a legal researcher turned activist uncovering Pacific Gas and Electric's cover-up of a major chromium contamination episode) and A Civil Action (1998, starring John Travolta and focusing on the legal aspects of the Woburn childhood leukemia case that I discussed in the preface), and in widely viewed TV specials such as Bill Moyers's 2001 Trade Secrets, which showed how the chemical industry hid data on how their products injure people.
But the most important evidence for public concern over toxics is the large number of instances in which citizens form community groups to deal with existing toxic contamination or to guard against the potential for contamination from new sitings of incinerators, dumpsites, or other sources. The popularity of books and movies about toxic contamination would not be possible without the actual mobilization of people, and this environmental health movement has become one of the most important social movements of our time. Environmental justice activists have built on this movement, expanding their concern to other hazards and inequalities. They have strengthened the grassroots struggle for environmentalism and environmental health by highlighting how social inequality and discrimination adversely impact health. They have also broadened strategies to improve environmental health by moving away from a focus on technical fixes in the policy arena to an emphasis on community organizing that explicitly links social justice and public health. In the process, they have helped reshape the environmental health movement to address racial and class inequalities and to take on a more totalizing political perspective. To understand how broad this concern is, consider that the Center for Health, Environment, and Justice (the national resource organization started by Love Canal organizer Lois Gibbs) has worked with more than ten thousand groups since its founding. This book views advances in environmental health as stemming primarily from social movements and social movement organizations such as the Center for Health, Environment, and Justice, the Toxics Action Center, and hundreds of environmental justice and environmental health groups around the country.
THE NATURE OF ILLNESS CONTESTATION
We might expect that a general public belief in the presence and etiology of a disease would be accepted once there was sufficient medical and scientific research. But such acceptance is possible only when the disease or its putative cause is not controversial. For example, even the powerful evidence linking tobacco and lung cancer was initially insufficient to produce general social consensus. The tobacco industry and its allies marshaled much financial and political support to deny the evidence. By using their extensive financial resources to perform research on the mechanisms of cancer instead of on the causes, by focusing on individual characteristics that might have correlations to cancer, and by carrying out focused advertising campaigns, tobacco companies created a public controversy in order to confuse the issue and create ambiguity. That effort postponed for decades the full medical recognition of the problem and stalled government action. Sufferers and their allies had to fight politically rather than rely exclusively on scientific evidence, despite its strength.
Likewise, the dangers of lead were known early in the twentieth century, yet lead producers and the paint companies that used lead as a major product component deliberately hid data on lead's health effects while advertising lead as a wonderful substance. The evidence of its ill effects was so overwhelming that many countries banned lead paint in the 1910s and 1920s, yet the United States waited until 1970. Scientists such as Herbert Needleman, who researched the dangers of lead on children, were branded as troublemakers and hounded by scientific colleagues. Science alone could not produce appropriate regulation to reduce lead poisoning. It took a concerted social movement beginning in the 1960s, pioneered by black and Latino rights groups (most notably the Black Panther Party and the Young Lords Organization).
We see similar problems with most environmental and occupational diseases. A broadly acceptable social definition, a new consensus by experts, and often a social movement are necessary to achieve a belief in the existence of the disease and its social and environmental causation. This situation is vastly different from the past, when professionals originated ideas and controlled the process of problem identification. Virtually all cases of contaminated communities are detected by lay discovery, largely because aff ected populations tend to be the first to notice sentinel health events or disease clusters that may indicate systematic or new environmental health problems. In addition, scientists and government agencies do not usually carry out routine surveillance that would detect such problems. Even routine surveillance is insuffi cient; for example, a state cancer registry may be mandated to publish annual reports of cancer excesses by town and city and may routinely tell the local health department, but this approach does not guarantee that residents will be made aware of higher than average rates of cancer where they live. Even when asked by communities to look into a problem, state agencies do not do enough. For example, a survey of all fi ft y state public health department responses to lay cancer cluster reports found that there were an estimated 1,300-1,650 such reports in 1988, a large number for short-staffed agencies. Many health departments discouraged citizens, however, sometimes requesting extensive data from them before they would go further with their investigations. And they often merely gave routine responses emphasizing the lifestyle causes of cancer, the fact that one of three Americans will develop some form of cancer, and that clusters occur at random.
Disputes over environmental causation are not the only places to fi nd illness contestation, either. For sociologists, contestation concerning health is a very common topic of study. Based on the work of Elliot Freidson, one of the major scholars of both medical sociology and the sociology of professions, we understand the frequent clash of views between lay and professional perspectives. We know that biological disease is experienced in the diverse ways that people experience illness, differing according to race, class, gender, religion, ethnicity, and locality. The literature is full of lay-professional conflicts over etiology, appropriate treatment, and combinations of self-care and alternative care alongside mainstream medicine. Medical sociologists are therefore steeped in the tradition of contestation. This contestation usually involves diseases or health situations that present a clear challenge to major social institutions. The environmentally induced diseases I discuss here are clear examples because the social definition brings with it a critique of corporate practice and government policy. Other examples include iatrogenic diseases (diseases caused by the practice of medicine) for which pharmaceutical firms have withheld data on side effects and unnecessary surgery such as hysterectomies.
PUBLIC REACTION TO ENVIRONMENTAL HEALTH EFFECTS
By not being receptive at earlier stages to known or potential environmental causation, science and government may lose precious time in discovering, treating, and preventing environmentally induced diseases. As a result, they are likely to lose public trust. Precautionary principle advocates speak in terms of "late lessons from early warnings" in reference to situations where knowledge of chemicals' toxicity were ignored until those effects had become very widespread. There are enough such examples that environmental activists increasingly feel that government, science, and business should have learned by now to be more cautious when examining aspects of the environment that have health effects. These aspects include well-known hazards with clear health effects, such as asbestos, which causes the lung disease asbestosis and the lung cancer mesothelioma; lead, which causes learning disabilities; benzene, which causes leukemia; PCBs used as electrical insulators, which cause chloracne; and diethylstilbestrol, a drug shown to be ineffective in its intended goal of preventing miscarriages, yet long used until evidence mounted of its role in causing vaginal cancer in users' daughters. In all these cases, credible evidence of dangers existed long before any action was taken, yet policymakers and scientists are still not applying these lessons in the present.
We have further examples from the history of the occupational safety and health movement, where workers and their unions have long been the first line of discovery of harmful effects of unsafe machinery and production processes, as well as of a variety of toxins, including coal dust, cotton mill dust, silica, lead, radiation, and agricultural pesticides. Occupational health issues have oft en brought to light the economic trade- offs whereby profits have frequently been placed ahead of the safety of the producers and consumers of industrial and agricultural goods. In many cases, corporations denied the existence of known health effects and instead blamed the victim. For example, company doctors at the Johns Manville Company told workers with asbestosis or mesothelioma (a rare lung cancer that is a signature disease of asbestos) that they merely had emphysema from smoking.8 Here we see how the corporate world can play on the same individual responsibility theme that permeates science and government. The more those institutions emphasize personal control over hazards, the more the corporate claim of individual responsibility is legitimized.
Much of what toxic waste activists have learned about such corporate trade offs has come from looking at the occupational health world. Yet these activists have dealt with a different set of issues as well because they have called into question exposures that often occur at lower levels than occupational exposures and are without an organizational apparatus, such as a labor union, to take on the problems. Like labor unions, toxic waste activists face a jobs versus environment blackmail situation. Further, corporations have an easier case against environmental causation because they can easily claim that there were many other potential sources of exposure for residents and that the residents' own behavior put them at risk.
Many people can grasp the significance of corporate and governmental denial when they look at the issue of radiation exposures due to government activities. The legacy of the "atomic veterans" is particularly crucial: many soldiers and sailors were deliberately exposed to radiation in the 1940s and 1950s to test exposure levels that would produce radiation-induced illnesses. Workers at nuclear weapons facilities and nearby residents faced high levels of accidental and deliberate releases. These victims fought long for recognition of their diseases and encountered deep government secrecy and implacable denial.
Given such a history, it is not surprising that today many people distrust official corporate and government statements on risks and hazards. Th is history makes it easier for people to believe that there are many environment health effects for which both business and government are responsible. Th e public responses to the toxic crises of our time—whether Love Canal—like contamination episodes or increases in cancers and in immunological and neurological disorders—represent not just the responses of individual organizations to specific problems. Rather, they represent a broad and growing public distrust of how science and government have operated and a belief that our society has become so full of risks and hazards that it is dominated by them—what Ulrich Beck terms the "risk society."
WHY PICK ASTHMA, BREAST CANCER, AND GULF WAR-RELATED ILLNESSES?
To explore these issues, I examine three cases of disease with known or suspected environmental causation—asthma, breast cancer, and Gulf War illnesses. In addition to those cases, I discuss many other contested illnesses throughout the book, though in far less detail. Out of so many diseases with potential environmental causation, why pick these three? In this section, I provide brief highlights of the answers to this question and go into depth on these matters in later chapters.
PROMINENCE IN THE PUBLIC EYE
There is much debate over identification, environmental causation, treatment, and the proper place of lay involvement. Asthma incidence has increased dramatically over the past decade, and there is widespread debate on the contribution of air contamination, especially small particles as yet unregulated by the EPA. Discussions about more stringent regulation call into question the whole history of air pollution regulation, provoke industry opposition based on cost considerations, and raise scientific concern about the research methods. Breast cancer has been linked to environmental causes, especially xenoestrogens that act as hormone disrupters. The growing evidence supporting this endocrine disrupter hypothesis has created much public and scientifi c discussion and is especially important given the ubiquity of those chemicals. People are shocked that the lifetime incidence for breast cancer is one in eight. Gulf War-related illnesses (GWRIs) were very visible for a while, but are less so now because of the highly political nature of the government's reluctance to treat fairly the soldiers who fought in a widely popular war. The Agent Orange controversy following the Vietnam War, during which veterans experienced increased risk of various diseases due to dioxin exposure, failed to provide a guide for how to deal with military- related environmental disease because the government was also then very reluctant to acknowledge Agent Orange's health effects. For the Iraq War starting in 2003, high rates of psychiatric disorders have been reported, making this issue once again a significant public-health concern.
PUBLIC SCRUTINY OF RESEARCH AND REGULATION
Funding, hypothesis formulation, research design, interpretation, and pressure for regulation are highly visible features of these contested illnesses. Pressures from laypersons and professionals have led directly to specific state and federal action to fund research. Asthma awareness advocates and activists, along with public- health professionals and air pollution scientists, have made air quality regulation a focus of their eff orts. They have fought to reduce emissions through stronger amendments to the Clean Air Act, the 1963 federal legislation aimed at reducing pollution, as well as through many local air pollution regulations. Breast cancer activists won state and federal funding in Massachusetts and New York for specific studies of a possible link between the environment and breast cancer. Along with other environmental activists, they have pushed for local, state, and federal adoption of the precautionary principle, which places the burden of proof for health effects of chemicals on the producers rather than on the consumers and declares that proof of safety should exist before chemicals are utilized in order to curtail or stop the use of potentially dangerous chemicals, even in the absence of definitive studies. The landmark 2003 San Francisco resolution directs all city agencies to use the precautionary principle to guide their activities. Gulf War veterans formed advocacy groups that obtained congressional support for investigations of their ailments when the Department of Defense (DOD) proved unhelpful in addressing their concerns. The research on these contested illnesses has been discussed widely both inside and outside of science, with a large amount of mass media coverage. Of course, these outcomes are positive, which does not always happen. Sometimes lay efforts do not lead to regulatory change or other desired outcomes, and the dispute over causation continues. Or, even if groups get funding for studies, they do not find results that help them, as we will see with the Long Island breast cancer studies.
PROMINENCE OF SOCIAL MOVEMENTS
As suggested by the previous point, social movements are central in bringing these contested illnesses to light and in pursuing research and treatment. Asthma activism has become a core element of many environmental justice groups, who organize around unequal distribution of environmental hazards, mostly involving racial inequality. Environmental justice organizing has highlighted how an illness such as asthma, which disproportionately impacts poor people of color living in urban areas, is driven largely by disparities in housing quality, access to health care and treatment (e.g., access to maintenance medications as opposed to a trip to the emergency room when suffering an attack), and exposures to environmental sources of pollution from point and mobile sources. In this way, environmental justice highlights the political economy of illness and how discrimination shapes environmental health disparities such as the incidence of asthma.
Pellow noted this type of approach in his environmental inequality model, which emphasizes the interaction of three methodological and analytical points: (1) the need to view environmental inequality as a sociohistorical process rather than as a discrete event; (2) the need to understand that environmental inequality involves a multiplicity of stakeholders with "shift ing interests and allegiances" rather than a simple victim-perpetrator dyad; and (3) the need to view environmental inequalities as a cyclical process of production and consumption.14 Pulido views environmental justice eff orts as "subaltern struggles" in which activists are in "direct opposition of prevailing powers" and challenge "the entrenched and all-encompassing ways in which power relations are constituted and experienced." The key theoretical insight off ered by Pulido's approach is that subaltern struggles over environmental issues are never solely about the environment. These struggles call into question forms of structured inequality and directly challenged institutionalized forms of domination. Subaltern groups must address a variety of social structures and institutions that contribute to environmental and social inequality because of their position within the socioeconomic structure. Because these groups are at the bottom of the socioeconomic structure, their goals and actions are always aimed at reconfiguring the distribution of power and resources in society. That is why their efforts to deal with asthma are at the same time efforts to gain more economic resources and political power for their communities. Agyeman takes this point further, arguing that environmental justice groups have developed a "just sustainability paradigm" that proactively combines environmental justice and sustainable development into a new hybrid. In this model, "environmental quality and economic and social health are inextricably linked." Thus, it is not surprising that the social movement component of asthma awareness advocacy and activism has made asthma into one of the key health issues around which minority populations organize.
Breast cancer activism has been one of the most significant health social movements of our time, involving people across a wide range of politics and achieving notable successes in increased breast cancer research funding. The environmental breast cancer movement (EBCM), a subset of this larger movement, has become an important avenue for pursuing environmental factors in breast cancer, as well as for more broadly integrating environmental politics and health movements. It has gone beyond breast cancer to take up many other environmental health concerns and in that process has been a major player in advocating for the precautionary principle as an overall social perspective, mainly through pushing for tighter control of endocrine disrupters. Because the movement focuses on endocrine disrupters as possible causes of breast cancer, it has helped to identify many potentially dangerous chemicals and to study exposures that have previously been unknown or poorly known. This focus on prevention has also affected the direction of the overall breast cancer movement.
Gulf War veterans organized to demand recognition of their symptoms, greater disability compensation, and more research on environmental causation. Though they did not achieve the breadth of organization and the continued mobilization gained by asthma and breast cancer activists, they did force the issue to public and governmental attention, winning some important gains. Their continued pressure kept attention on GWRIs, even in the absence of positive data on health effects, and compelled the military to revise sharply upward its estimates of how many soldiers were exposed to toxins, especially by finally admitting to widespread exposure from the Khamisiyah weapons depot. Various government reports were also critical of the delivery of care, of poor DOD and Department of Veterans Affairs (VA) collaboration, and of the lack of adequate research overall.
PUSHING FOR DEMOCRATIZATION OF SCIENCE
Activists in the areas of all three conditions have increased democratization of science by raising issues of medical science and environmental research as part of public debates, rather than allowing them to remain behind the closed doors of science and government. Asthma activists in environmental justice organizations have become major players in pushing for the growing federal funding of community- based participatory research, where citizens and scientists work together on environmental health research. Breast cancer activists have succeeded in getting movement members to be part of state and federal review panels, where they play a role in deciding what research to fund. The lay-professional collaboration in these contested illnesses has helped expand the overall push for democratic participation in science, making citizen-science alliances increasingly part of the social fabric of science.
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