Toxic waste, contaminated water, cancer clusters—these phrases suggest deception and irresponsibility. But more significantly, they are watchwords for a growing struggle between communities, corporations, and government. In No Safe Place, sociologists, public policy professionals, and activists will learn how residents of Woburn, Massachusetts discovered a childhood leukemia cluster and eventually sued two corporate giants. Their story gives rise to questions important to any concerned citizen: What kind of government regulatory action can control pollution? Just how effective can the recent upsurge of popular participation in science and technology be? Phil Brown, a medical sociologist, and Edwin Mikkelsen, psychiatric consultant to the plaintiffs, look at the Woburn experience in light of similar cases, such as Love Canal, in order to show that toxic waste contamination reveals fundamental flaws in the corporate, governmental, and scientific spheres.
The authors strike a humane, constructive note amidst chilling odds, advocating extensive lay involvement based on the Woburn model of civic action. Finally, they propose a safe policy for toxic wastes and governmental/corporate responsibility. Woburn, the authors predict, will become a code word for environmental struggles.
No Safe Place Toxic Waste, Leukemia, and Community Action
Chapter 4. Taking Control: Popular Epidemiology
The public's knowledge of the Woburn problem stems solely from the residents' actions in discovering the leukemia cluster and pursuing the subsequent investigations. In researching this book, we read countless articles in newspapers, popular magazines, scientific journals, and health publications and followed television and radio coverage of the Woburn events. Uniformly, reporters and commentators view the Woburn citizens as the most powerful instance to date of a lay epidemiological approach to toxic wastes and disease. Although one of us (Phil Brown) some time ago coined the term "popular epidemiology" to describe Love Canal residents' organizing efforts, Woburn actually furnishes the first example of popular epidemiology strong enough to allow for the detailed formulation of the concept.
Traditional epidemiology studies the distribution of a disease or a physiological condition and the factors that influence this distribution. Those data are used to explain the causation of the condition and to point toward preventive public health and clinical practices. 1 In contrast, popular epidemiology is the process by which laypersons gather scientific data and other information and direct and marshal the knowledge and resources of experts to understand the epidemiology of disease. In some respects, popular epidemiology parallels scientific epidemiology, although they may proceed in different forms and tempos. In some cases, such as the discovery of Lyme Disease in the early 1980s, laypersons solved an epidemiological mystery before trained scientists. Despite similarities to traditional epidemiology, however, popular epidemiology is more than a matter of public participation in traditional epidemiology. Popular epidemiology goes further in emphasizing social structural factors as part of the causative chain of disease, in involving social movements, in utilizing political and judicial remedies, and in challenging basic assumptions of traditional epidemiology, risk assessment, and public health regulation. Still, the starting point for popular epidemiology is the search for rates and causes of disease.
We shall restrict the label of adherent or practitioner of popular epidemiology to residents who develop and apply the work of popular epidemiology in their communities. Sympathetic scientists may become supporters of popular epidemiology, but lay involvement in the discovery and pursuit of disease in such cases as Woburn is so significant that we shall apply the term only to laypersons. Adherents believe strongly that science, like government, must serve the needs of the people. Just as they question the political apparatus that typically discourages lay investigations into toxic hazards, so do they question the detached attitude of many in the scientific community who champion supposedly value-neutral scientific methods.
Popular epidemiology is a pursuit of truth and justice on behalf of the public that involves both laypersons and professionals. Popular epidemiology is not merely a system of folk beliefs, although they certainly deserve attention from professionals. Most centrally, popular epidemiology unites lay and scientific perspectives in an effort to link science and politics. 2
Although our discussion of popular epidemiology focuses on toxic waste contamination, the approach is valid for many other phenomena such as nuclear plants, pesticide spraying, and occupational disease. Popular epidemiology is an extremely significant advance for both public health and popular democratic participation.
Defining the Problem
The Quality of Lay Observation
Popular epidemiology is important for medicine and society because people often have access to data about themselves and their environment that are inaccessible to scientists. In fact, public knowledge of community toxic hazards in the last two decades has largely stemmed from the observations of ordinary people. Similarly, most cancer clusters in the workplace are detected by employees. 3
Even before observable health problems crop up, lay observations may bring to light a wealth of important data. Pittsfield, Massachusetts, residents knew before any authorities did about polychlorinated biphenyls (PCBs) that leaked from storage tanks at a General Electric power transformer plant and polluted the Housatonic River and the local groundwater. 4 Yellow Creek, Kentucky, residents were the first to notice fish kills, disappearances of small animals, and corrosion of screens and other materials. As one resident put it, in discussing a successful struggle to clean up a PCB site in Marlboro, New Jersey: "You didn't have to be a scientist. Trees were down, grass wasn't growing. You'd think you were on the moon or something." 5 Helene Brathwaite, leader of a struggle to remove asbestos from schools in Harlem, made a similar claim: "Nobody knew any more about this than I did. If you assume you're going to get experts to help you, you're in trouble. Most of the time on environmental issues there are no experts, and if there were we wouldn't have these problems." 6
This "street-wise or creek-side environmental monitoring" 7 occurred in Woburn, where residents noticed water stains on dishwashers and a bad odor long before they knew of adverse health effects. Love Canal residents remembered persistent bad odors, rocks that exploded when dropped or thrown, leakage of sludge into basements, chemical residues on the ground after rainfall, and irritations on children's feet from playing in fields where wastes were dumped. 8 Residents of South Brunswick, New Jersey, noticed foul-tasting water and saw barrels labeled "toxic chemicals" dumped, bulldozed, and ruptured. 9
Judith Broderick, from Reading (next to Woburn), noticed previously that she became ill for three months after exposure to chlorine leaks from a nearby factory. Later, she smelled the rotten-egg odor of hydrogen sulfide from decaying animal hides at a former glue factory. She remembers that "People felt nauseated. We had headaches, our eyes would burn, we had difficulty breathing, sleeping, eating." 10 Broderick knew that among the eight women of childbearing age on her block, there were six miscarriages and three stillbirths. At a nearby school, three of five pregnant teachers miscarried. When she looked out of her window she saw three special education buses coming to pick up children with various learning disabilities and handicaps. She thought, "Too many lost babies, too many damaged children." 11
Out of such observations, people develop "common sense epidemiology," 12 whereby they hypothesize that a higher than expected incidence of disease is due to pollution. In some cases, laypersons carry out their own study or initiate a study for experts to carry out. For example, in Pittsfield, a retired engineer was concerned about elevated cancer rates and known PCB contamination. He initiated a study which showed a high correlation between working for General Electric and having PCBs in the blood. Other residents then linked those blood levels with their knowledge of elevated cancer rates. 13 In Yellow Creek, Kentucky, a woman who helped organize a health survey remembered: "Every family told of kidney troubles, vomiting, diarrhea, rashes. One family showed us big welts right after they showered. And there were huge numbers of miscarriages. I cried every night. We gave our data to Vanderbilt University and they found high rates of these diseases. The Centers for Disease Control found some leukemia but said it wasn't statistically significant. Statistics don't tell you. People do. I've walked this creek and I've seen the sick people." 14
In 1973 a Michigan farmer, Rick Halbert, noticed that his cattle were becoming hunchbacked, bald, sterile, and crippled by overgrown hoofs before dying. He conjectured that those symptoms were caused by the cattle feed and carried out an experiment to test the idea. He fed twelve calves on that feed alone. Five died within six weeks, and most of the rest died during the next two months. Halbert reported these data to the Michigan Department of Agriculture, but they were not willing to repeat the experiment with cows. They gave the suspect feed to mice, all of whom died, but the supply company argued that the animals died from eating cattle feed instead of mice food. Halbert then hired scientists who, employing a mass spectrograph, found bromine in the feed. Eight months after Halbert's first observations, investigators learned that Michigan Chemical Corporation had accidentally supplied the Michigan Farm Bureau with sacks of fire-proofing chemical PBB, which is known to cause cancer, genetic mutation, and birth defects. During the crucial eight-month period between the farmer's first observations and the discovery of the accident, a great deal of contamination had already occurred. Human breast milk was found to contain PBB; many farm animals were poisoned too. Tens of thousands of livestock and millions of chickens were slaughtered as a result. 15
Another example of lay detection is offered by the dioxin contamination in Moscow Mills, Missouri, one of several Missouri dioxin sites besides the well-known Times Beach. In 1971, horse rancher Judy Piatt noticed a strong smell after a waste hauler sprayed road oil to keep dust down in the stable area. The next day she saw dying sparrows; in the following weeks cats and dogs lost hair, grew thin, and died. Forty-three of eighty-five horses in the exposed area died within one year, and of forty-one newborn horses, only one survived. Three months later Judy Piatt's daughter was hospitalized with internal bleeding. Based on her supposition that the waste oil was responsible, Piatt followed the route of the salvage oil dealer for over a year, noting sites where waste oil and chemicals were dumped. She sent her information to state and federal officials, but no action resulted. It was three more years until the CDC found dioxin in the oil, at 30,000 parts per billion; anything over one part per billion is considered dangerous. 16
Patricia Nonnon of the Bronx provides an additional illustration of creative case finding. When her nine-year-old daughter contracted leukemia, she remembered hearing of other cases; in fact, there were four in the three-block area bordering on the Pelham Bay dump. Prior complaints to the state environmental agency had brought no results, so Nonnon tried a different approach. She set up a telephone hot line in 1988 and received more than 300 calls reporting many diseases: twenty-five cases of childhood leukemia, sixty-one cases of multiple sclerosis, ten lupus, nine Hodgkin's disease, and six rare blood diseases. All respondents lived less than a mile from the dump. Residents knew the landfill was hazardous, because a few years before several firms had been convicted of illegally dumping hundreds of thousands of gallons of toxic waste over a decade at five landfills, including Pelham Bay. 17
In addition to collecting information, laypersons employ logical tests of the relationship between location and health. One Love Canal resident reported: "As far as the relationship of this to the chemicals, let me put it this way, when we go away from here, we feel fine. We just spent a month out west, no eye problems, no nerve problems, felt good. I slept like a log. We're back home, we have the same problems again. Headaches, eyes, nerves, not sleeping." 18 A number of other Love Canal residents reported changes in their family's health after their official relocation. 19
In Woburn, residents were the first to notice the leukemia cluster, through both formal and informal methods of identification. Then they framed a hypothesis linking pollution to disease and pressed local, state, and federal agencies to investigate the cluster. They particularly asked authorities to test the water that they suspected of being a cause. After state environmental officials found high concentrations of TCE and PCE in wells G and H, residents argued that those known carcinogens were the cause of the cluster. To bolster their hypothesis, Woburn residents joined with biostatisticians from the Harvard SPH to carry out the community health survey.
Without community involvement, this study would not have been possible because of the lack of money and personnel. The very fact of lay involvement led professionals and government to charge bias. Nevertheless, extensive analyses by the researchers demonstrated that the data were not biased, especially with regard to the use of community volunteers as interviewers. Resistance to the idea of lay participation is harmful, since professional and governmental distrust of the public can delay amelioration and cause additional disease and death.
The Myth of Value-Neutrality
Popular epidemiology opposes the widely held belief that epidemiology is a value-neutral scientific enterprise that can be conducted in a sociopolitical vacuum. It also challenges the belief that epidemiological work is properly conducted only by experts. Critics of the Harvard/FACE Woburn health study—among them the CDC, the American Cancer Society, the EPA, and even the SPH's Department of Epidemiology—argued that the study was biased by the use of volunteer interviewers and by prior political goals. The possibility of volunteer bias is a real concern, but on a deeper level the criticisms assumed a value-free science of epidemiology in which knowledge, theories, techniques, and actual and potential applications are themselves devoid of self-interest or bias.
As was the case in Woburn, popular epidemiology can include methodological and statistical controls for bias. Indeed, without skewing any evidence it can overcome some fundamental limitations of scientific endeavors. In practice science is limited by such factors as finances and personnel. Without popular participation it would be impossible to carry out much of the research needed to document health hazards. Science is also limited in its conceptualization of what problems are legitimate and how they should be addressed. As we have pointed out, physicians are largely untrained in environmental and occupational health matters, and even when they observe environmentally caused disease, they are unlikely to blame the disease on the environment. Similarly, epidemiologists and public health researchers are not sufficiently attuned to problems of toxic waste contamination. Funding agencies are reluctant to support the kinds of investigations needed at toxic waste sites. And, most fundamental, scientific approaches to toxic waste contamination are directed by an old paradigm that no longer fits reality.
Environmental health activists are by definition acting to correct problems not adequately addressed by the corporate, political, and scientific establishments. Popular involvement is usually necessary for professionals to target the appropriate questions, as is clear from the history of the women's health movement, 20 the occupational health and safety movement, 21 and the environmental health movement. 22 These movements have significantly advanced public health and safety by pointing out otherwise unidentified problems and showing how to approach them, by organizing to abolish the conditions that give rise to them, and by educating citizens, public agencies, health care providers, officials, and institutions. Popular participation brought to the national spotlight such phenomena as DES, Agent Orange, asbestos, pesticides, unnecessary hysterectomies, abuse of sterilization, black lung disease, and brown lung disease.
Issues of Scientific Method
Standards of Proof
Despite the successes of popular epidemiology, we must take a closer look at critics' concerns about breaches of scientific method. Does popular epidemiology adhere to the appropriate standards of proof? Authorities in fact disagree on the level of statistical significance required for intervention in environmental hazard settings. Many communities that believe they have uncovered environmental health risks find themselves challenged because they lack enough cases to achieve statistical significance. Some professionals who work with community organizations stick closely to accepted standards of statistical significance, 23 while others argue that such levels are as inappropriate to environmental risk as they are to other issues of public health and safety, such as bomb threats and possible epidemics. 24
We believe it is imperative to follow Ozonoff and Boden, who distinguish between statistical significance and public health significance. An increased rate of disease may be of great public health significance even if statistical probabilities are not reached. Further, clinical medicine tends to err on the safe side of false positives (claiming a relationship when there is none), and epidemiology should mirror clinical medicine rather than laboratory science. 25 Some researchers have noted that recent epidemiological research has a tendency to accept an increasingly lower level of false positives. 26
Traditional epidemiologists prefer false negatives (type II error) to false positives (type I error); that is, they would prefer falsely to deny an association between variables when there is one than to claim an association when there is none. 27 To achieve scientific statements of probability requires more evidence than is necessary to state that something should be done to eliminate or minimize a health threat. In the view of one observer,
The degree of risk to human health does not need to be at statistically significant levels to require political action. The degree of risk does have to be such that a reasonable person would avoid it. Consequently, the important political test is not the findings of epidemiologists on the probability of nonrandomness of an incidence of illness but the likelihood that a reasonable person, including members of the community of calculation [epidemiologists], would take up residence with the community at risk and drink from and bathe in water from the Yellow Creek area or buy a house along Love Canal. 28Indeed, those are the kinds of questions presented to public health officials, researchers, and government members in every setting where there is dispute between the perceptions of citizens and officials.
For residents near toxic waste sites, proved toxicity is not required for alarm and action. Someone in Love Canal put it well:
I think the most important question that people ask, they always ask, "Well, how do the chemicals affect your family?" That really has nothing to do with it, because having two children, and living in that neighborhood, you had no choice. You had to get out of there whether the chemicals affected us or not. You cannot live a good, happy life always wondering. 29In a further excursion into the politics of epidemiology, Beverly Paigen, a scientist with the New York State Department of Health who was instrumental in aiding the Love Canal residents, discusses a conversation with an epidemiologist from her office:
We both agreed that we should take the conservative approach only to find out that in every case we disagreed on what the conservative approach was. To him, "conservative" meant that we must be very cautious about concluding that Love Canal was an unsafe place to live. The evidence had to be compelling because substantial financial resources were needed to correct the problem. To me, "conservative" meant that we must be very cautious about concluding that Love Canal was a safe place to live. The evidence had to be compelling because the public health consequences of an error were considerable. 30Paigen offers valuable insight into the scientist's choice between type I error (being more likely to accept false positives) and type II error (being more likely to reject false positives).
The degree to which one is willing to make one or the other kind of error is a value judgment and depends on what one perceives to be the consequences of making the error. To conclude that something is real when it is not means that a scientist has followed a false lead or published a paper that later turns out to be incorrect. This may be embarrassing and harmful to a scientist's reputation. In contrast, to ignore the existence of something real means that a scientist fails to make a discovery. This may be disappointing but it does not harm the scientist's reputation, so the scientist is more willing to make type II errors. However those charged with protecting public health and safety should be much more concerned about the second type of error, for a hypothesis that is not recognized drops out of sight. 31Of her own scientific experience, she writes:
Before Love Canal, I also needed a 95 percent certainty before I was convinced of a result. But seeing this rigorously applied in a situation where the consequences of an error meant that pregnancies were resulting in miscarriages, stillbirths, and children with medical problems, I realized I was making a value judgment. 32Paigen argues that the value judgment involves deciding "whether to make errors on the side of protecting human health or on the side of conserving state resources." The same logic applies to the choices between protecting public health and accepting "environmental blackmail" and the primacy of corporate development and profit. 33
Thus the competing paradigms of risk are not merely clinical and epidemiological, but also intensely political. On the one hand we have what David Dickson terms the "technocratic paradigm," in which the desire to protect the business community shapes regulation. In contrast, the "democratic paradigm" starts from the victims' perspective, values safety over profit, requires less than conclusive proof in order to take action, and provides those likely to be affected with an active voice in determining risk and making decisions. 34
How Good Are Official Data?
Even when citizens accept standard significance levels, they may suspect that the collection and analysis of official toxic hazard data are erroneous. Massive public complaints about Massachusetts' response to excess cancer rates in twenty communities (including Woburn) led to evaluations by the state senate and the University of Massachusetts Medical School, which found that the Massachusetts DPH studies of those excess rates were poorly conceived and methodologically weak. 35 The DPH studies were often unclear about what problem concerned the community or the DPH. Most studies had no adequate hypothesis, failed to mention potential exposure routes, and as a result rarely defined the geographic or temporal limits of the population at risk. Methods were presented inconsistently, statistical terminology was confused, case definitions were weak, and environmental data were rarely presented. Further, statistical tests were inappropriately used to explain away problems. In the case of elevated cancer in towns of Upper Cape Cod, initial analysis found no towns with excess rates. When a later analysis combined two adjacent towns, the data were compelling for the elevation of several cancer types, yet the DPH claimed that excess lung, colon, and rectal cancers had life-style rather than environmental causation. 36 Activists and sympathetic scientists find such arguments unacceptable; they view them as blaming the victims while denying possible external causes.
The Massachusetts commissioner of public health appointed a Study Commission on Environmental Health Issues in 1983 to report on problems such as these. The Study Commission's complaints mirrored those of the citizens:
Despite its public mandate, DPH is seen by such members of the community as an obstacle and an adversary, not as an agency that is helpful and sensitive to their needs. The Environmental Health Services Bureau routinely responds to a citizen concerned with local chemical contamination by minimizing the problem, stating, in effect, "We can't bother to investigate every unsubstantiated claim or concern," or, "When you can provide some hard scientific or statistical evidence, please call us again." 37The commission found that despite its mandate to err on the conservative side of health protection, the DPH imagined the political risks to be too great and took the opposite tack to avoid antagonizing industry. 38
Massachusetts is a particularly interesting example because the damaging effects of the poor studies and nonresponsiveness to the community included the resignation of the public health commissioner. Elsewhere researchers often used exposed groups diluted by unexposed individuals and comparison groups that were inappropriate because they were likely to be exposed to the same health threats as exposed groups. 39 In the Michigan case of PBB-contaminated cattle feed, the state health department carried out a study so poorly designed that 70 percent of the control animals showed the presence of PBB. But the state would not admit the flaws in its work. 40
Lay individuals and groups trying to uncover and remedy environmental hazards have far fewer scientific and financial resources than do government units and are therefore at a scientific disadvantage. 41 Most communities that consider themselves at risk or as victims of environmental disasters have no stable source of scientific data. If they are lucky, they can mobilize local scientific support. But university-based scientists frequently consider applied community research to be outside the regular academic structure of challenge and reward. Often they see the work of uncovering environmental problems as fairly routine compared with work on frontiers of science such as molecular biology. 42 Furthermore universities have become increasingly dependent on corporations and government for support, and scientists have lost both autonomy and the urge to challenge established authority. 43
Scientists who ally themselves with citizen efforts are sometimes punished. When Beverly Paigen aided Love Canal residents in their health studies, she was harassed by her superiors. After Paigen spoke out publicly, the New York Department of Health withdrew a grant application she had written without telling her. They refused to process papers on another grant already funded, thus denying her the funds. She was told that because of the "sensitive nature" of her work, all grants and research ideas had to go through a special review process. Her professional mail was opened and taped shut, and her office files were searched after working hours. Paigen's state tax return was audited, and she saw in her file a clipping about her Love Canal work. Later, the state tax commissioner wrote her and apologized. Paigen was not the only scientist harrassed for siding with Love Canal residents. William Friedman, regional director of the Department of Environmental Conservation, and Donald McKenna, senior sanitary engineer in the regional office, were demoted and transferred, respectively, for raising questions about the state's investigation of Love Canal. 44
Similar cases of retaliation have been documented elsewhere. Melvin Reuben, director of the Experimental Pathology Laboratory at the Frederick Cancer Research Facility, Frederick, Maryland, was forced to resign for warning that malathion was carcinogenic; Irwin Billick, head of the Division of Environmental Research at the U.S. Department of Housing and Urban Development was fired for "unnecessary" work on lead poisoning. 45 In 1981, Peter Infante, a staff scientist for the Occupational Safety and Health Administration (OSHA), was threatened with dismissal for too energetically reporting the carcinogenicity of formaldehyde. 46
A cardinal assumption of scientific research is that the truth and validity of science are affirmed through open access to data, yet lay inquiry into environmental health risks is often obstructed by secret scientific data and analysis. Officials sometimes withhold information on the basis that it will alarm the public, that the public does not understand risks, or that it will harm the business climate. 47 The above-mentioned University of Massachusetts evaluation of DPH studies of excess cancer rates grew out of public pressure on the legislature. Citizens were angry that the health department did not seek the input of citizens, communicate data to affected towns, or share information when asked. Local health officials reported that they typically heard of elevated cancer rates through the media rather than from the DPH. Perhaps a good deal of the governmental and professional resistance to popular epidemiology derives from the fact that lay efforts very often point to the flaws and biases in official data that we have noted.
Lay investigations of environmental contaminants require full information. Although the right to know is usually associated with workers' right to know of toxic hazards in the workplace, the notion of a community right to know has developed recently. Community groups want all existing data to be available to them whether or not there are identifiable health effects. Although the agencies safeguarding the data defend secrecy on the ground that people will become alarmed, the people who request data from state health departments and cancer registries are clearly already alarmed. Another official excuse is that the media may make a story out of nothing. "Media hype" occurs throughout society, however, and is simply the price of democratic access to information. 48
Federal secrecy in investigations of the Woburn cluster violated residents' right to know. As mentioned previously, the EPA conducted a secret investigation of Woburn and thereby denied the public access to important scientific data. Past EPA administrator William Ruckelshaus formed the study group in 1984, but its existence was not discovered until May 1988. 49 That episode is reminiscent of the New York State Department of Health's response to Love Canal. Following a long train of events, in which the state did not release data to independent scientists, Governor Carey appointed a special commission chaired by biologist Lewis Thomas. Activists who invoked the New York Freedom of Information Act learned that the commission violated the law by not announcing meetings and not holding them publicly. 50 Indeed, knowledge makes a difference. One large population survey determined that the level of concern for environmental toxics rose with the number of information sources. 51 Another study found a positive correlation between information about the Diablo Canyon nuclear plant and the opposition to licensing it. 52
In addition, the federal government has dramatically affected the contours of environmental issues by loosening the acceptable levels of toxic hazards and regulatory agency enforcement. 53 The Reagan administration reduced controls on air and water pollution, stalled the recognition and prevention of acid rain, and reduced the regulatory power of EPA and OSHA. In December 1987 the Supreme Court limited the scope of the Clean Water Act when it ruled that citizens and environmental groups cannot sue companies for past violations. 54 Since people have long been denied access to necessary information, this decision is particularly unfair.
In looking at official resistance to acknowledging toxic waste contamination, we cannot really separate government and scientists, although they are not always the same. What we actually have are combined government and professional units, such as DPH, EPA, and CDC. None are solely governmental or solely professional, although the government uses professional models in its deliberations. Toxic waste activists realize that their main target is often government agencies, since it is they that have the power to act. Further, government agencies are essentially in control of scientific inquiry at toxic waste sites and in this role play a prime role in blocking knowledge and participation. Indeed, government agencies often make political decisions couched in scientific terms. In some cases government bodies obstruct citizens by being uninformed users of scientific knowledge. In either case, government officials and agencies constitute a major obstacle to community investigations of toxic waste.
Unfortunately, the "conspiracy theory" holds true too frequently. In one sample of 110 community action groups, 45 percent claimed that government agencies blocked their access to data. 55 In another study of twenty-five contaminated communities, sixteen discovered the problem themselves and petitioned authorities for aid. In all but one case, the victims judged the official response to be inadequate. 56
A representative example of government obstacles is found in Friendly Hills, a suburb of Denver. Candace Logue, a founder of the Friendly Hills Action Group, reported that at Tupperware parties in the early 1980s mothers compared notes and wondered why large numbers of children were sick or dying. When the state health department and the EPA both declined to study the problem, people canvased door to door. They found that from 1976 to 1984, fifteen children had died: eight from cancer, five from birth defects, and two from immunological disease. A seven-month fetus also died. Thirty-four other children were suffering from those and other serious diseases. 57
State officials claimed that all illnesses were within expected limits; though there were more childhood cancer cases than expected, they might be due to chance. Residents suspected toxic waste discharges from a nearby Martin Marietta Corporation facility. One week after officials pronounced the discharges safe, the Air Force, which runs a test facility on the Martin Marietta site, admitted that the groundwater was contaminated by toxic chemicals. Thereupon, the water board shut down the water treatment facility, for reasons it claimed were related only to its age. Residents found that Martin Marietta had a record of toxic spills. Water board officials then responded that the nearby water treatment facility, which would have been contaminated by such spills, did not supply water to Friendly Hills. The Friendly Hills Action Group found water board maps that showed this to be untrue. Furthermore, Martin Marietta was in fact fined by the state health department for many violations of water discharge permits. The Air Force had acknowledged toxic wastes underground. Several months later EPA scientists found serious contamination, including TCE, in a plume, or underground wave, stretching from the Martin Marietta site toward the water plant. 58 The belated discovery of what residents knew long before is eery and infuriating—and, sadly, it is common to many toxic waste sites.
In addition to obstructing citizens' desire for information, government officials often advise people to alter their life-styles to minimize their risks. 59 A Yellow Creek citizen who asked a state official about health effects on future children was told that it was best not to get married. When asked about threats to food gardens, the official advised residents to stop growing their own food. 60 State health officials recommended that Love Canal residents who were pregnant or had young children move, although the state was not yet prepared to fund such relocation. 61 Such responses trivialize realistic worries and treat citizens as annoyances. As Judy Broderick recounts, her calls to local and state officials about pollution in Reading were treated as "just a nuisance." 62
Initial shock at the existence of toxic substances often gives way to anger at public officials who minimize or cover up the problem. Residents at toxic waste sites feel angry at the corporate polluters, of course, but they initially trust that their government will serve them and remedy problems. When the government fails to do so, citizens confront a breach in their essential concepts of democratic governance. We have dealt with this in an earlier chapter, showing the deep antagonism between Woburn residents and their elected and appointed officials.
A Velsicol victim in Hardeman County, who has since died, told a reporter, "We thought people from EPA would help us. Next thing one of them is working for Velsicol. The government won't watch the industry." 63 Another victim said:
I knowed they was dumping stuff, but they said it wasn't dangerous. One day I found this snake and threw him in one of the pits and he moved around a bit and then he died. But I never thought it'd get in our water. I'd take a bath and break out, like chicken pox. Take another and there's the pox again. I took a water sample to the health department; they said nothing's wrong with it. I thought they was good people, smarter than I was. But they wasn't. 64There are, of course, some well-intentioned government bodies that nevertheless cannot act effectively in toxic waste crises. Public health departments may have problems with their own organizational boundaries, such as in relation to state environmental agencies, and also face tensions between the public and private sectors, in which they attempt to minimize their regulation of private enterprise. Further, state health and environmental agencies commonly exhibit a bureaucratic tendency to minimize and underestimate toxic waste problems. 65 Another component of the bureaucratic mentality is the tendency of state and federal officials to focus on site cleanup rather than on the health of the population. This perspective is not only incomplete but also antagonizes residents who are deeply concerned about their health. 66
Institutional inertia and boundary disputes are common in all areas of social policy. In environmental policy, we find extreme disorganization and confusion. The EPA enforces eight separate laws and is organized disjunctively, with little integration and cooperation among component parts and little overall mission. In carrying out its work, the EPA deals with ninety different congressional committees. 67 At both state and federal levels, regulation and legislation are too specific to the medium of contamination—air, water, soil. An integrated effort would be more appropriate, but agencies and institutions protect their own areas, fearing to lose power and budget allocations in a unified, cross-media reform. Individual scientists usually protect their narrow specializations and remain focused on a single medium. 68
As with medical care, mental health care, and other major elements of social policy, environmental laws and regulatory mechanisms are rarely conceived of in terms of long-term planning. Rather, they are approached incrementally through an agglomeration of partial programs tailored for particular interest groups. Lack of planning hampers effective policy for the long run, as well as current efforts at specific toxic waste sites.
Issues of Professionalism
Professionalism and Information Control
Scientific obstruction of popular epidemiology must be seen in a wider context. Widespread professional antagonism to popular participation in scientific endeavors usually has nothing to do with disputes over scientific facts. Instead, scientific professionals object because they need to defend their professionalism, institutions, or political-economic alliances.
A huge gulf separates professional and lay perspectives and behaviors. Scientists, like other professionals, are a tightly knit community of experts who generally accept the belief that science and technology are best left to scientists and engineers. 69 They often display scientific paternalism and "professional hubris," holding that laypersons cannot be involved in scientific decision making. 70 Health care activists have effectively criticized and discredited this attitude in the health care system.
Professionals generally do not want to let laypersons take on the work they control as professionals. This jealousy is particularly ironic in epidemiology, since the original "shoe-leather" epidemiological work that founded the field was much like popular epidemiology today. The Woburn residents' efforts resemble John Snow's classic study of cholera in London in 1854, but the stakes in epidemiology have changed since John Snow's day. If scientists do not control the research process, they lose scientific status and funding.
Professionals' claims to autonomy in directing scientific inquiry rest in part on the notion that epidemiological science can reach a high degree of certainty. In truth, however, scientific knowledge is full of uncertainty, especially in the field of toxic waste contamination. Uncertainty, combined with the sociopolitical context of toxic waste crises, provokes scientific controversy. As Thomas Kuhn has pointed out, all science is about controversy, particularly when paradigms of "normal science" are challenged by anomalies and "revolutions." 71 The production of scientific facts, Bruno Latour adds, is a collective effort and always involves controversy. "Nature" cannot, he claims, settle controversies, since "nature" itself is determined by the outcome of the controversy. To understand scientific controversies in a specific field, we must "follow scientists in action," observing what parties are involved and how they collaborate in the social construction of scientific facts. 72
Toxic waste activists have been watching science in action and find much reason to doubt its unqualified veracity. Even about such a well-documented site as Love Canal it is hard to know exactly what happened: "Given the persistence of dissension among officials, community leaders, eminent scientists, government agencies and the residents themselves, it is probable that any 'truth' about Love Canal will always be provisional. As a participant in this study observed, 'That's the whole summary of the canal. Everybody knew what was going on and when you got right down to it, nobody knew what was going on.' " 73 Not only was the community at odds with officials, but the official agencies disagreed with one another. There was no consensus. In the absence of scientific clarity, people's "understandings and explanations had to be constructed substantially in terms of experiences, attitudes, and values." 74 In a setting of such ambiguity and uncertainty, social and interpretive approaches to toxic waste disasters will thrive.
From their comparative study of the communication of risk, Krimsky and Plough point out that there are two models, based on "technical rationality" and "cultural rationality." Cultural rationality appeals to folk wisdom, peer groups, and traditions. It asks questions that are not part of the technical sphere, such as "Why do we need this product?" It looks at direct and personal effects of the environmental risk. Technical rationality, however, has a narrower range of interests and is concerned with transferring information specifically geared to a technical solution. In addition, this information is usually supplied only on demand rather than voluntarily, since public education is not generally among the technical rational aims. Unfortunately, many official agencies consider the cultural view to be an error and thus butt up against it rather than work with it to serve as "translators" between the two models. 75 When two models with different assumptions and goals are in combat, uncertainty grows and spreads.
Uncertainty also infects the "margins" of clinical and epidemiological knowledge, such as transgenerational effects of toxics, chronic low-dose exposure, and disease clusters. There is much scientific debate about these issues, resulting in a high degree of uncertainty. At the margins, professionals assert their dominance even more strongly than usual because of this uncertainty. 76 They redouble their claims to a spurious certainty. Uncertainty exacerbates public dissatisfaction as well, because it often leads to inaction or inappropriate action by scientists. In this cycle, professionals become even more adamant about their scientific prerogatives and even more averse to lay involvement.
Professionalism embodies a high degree of information control. At its most basic, this control involves the exclusion of laypersons as we have mentioned. In addition, professionals' need to control information leads to incomplete and unspecific communications about risk. "A scientist speaking in a community about the health effects of a hazardous waste site is part of a political ritual that aims to evoke confidence and respect. The technical information in the message is secondary to the real goal of the communicator: 'Have faith; we are in charge.' " 77
The directors of the health study of the Missouri dioxin contamination initially planned to notify residents of specific laboratory results. On reflection, and without consulting the community, those professionals decided that the information was "too technical." As a result, "low hematocrit" followed by a specific percentage was replaced with "abnormal blood count," and "elevated cholesterol" followed by a number was replaced with "abnormal blood chemistry." 78 Residents at Love Canal and other sites complained about the same vagueness of information.
Such bowdlerization of data demeans the courage and intelligence of the victims and unfairly deprives them of information crucial to management of their health. Uncertainty causes an alarmist response. Another risk-communication technique that causes uncertainty and alarm is the practice of defining sharp cutoff points above which human exposure is considered to be unhealthful. This is always both a scientific and a policy decision, since whenever a situation is declared unhealthful some remediation, such as a company-supplied water filter, is called for. But residents at toxic waste sites are also taught to accept the epidemiological notion of a dose-response curve, in which higher degrees of exposure lead to more health effects.
One commentator makes an analogy to the highway speed limit. It makes no sense to say that it is only unsafe to drive over fifty-five miles per hour. After all, auto speed is directly related to fatalities. The occupant of a car can escape injury at ninety-five miles per hour, though this is less likely; similarly the occupant can be injured at thirty miles per hour. There is no speed at which you can say that risk is absent. Similarly in toxic exposure, a dichotomy with a "trigger point" is inappropriate; it is confusing as well, when people have already been told they should believe in a continual, metric relationship. 79 Many contaminated communities have even been told they were not victims of exposure, precisely because no one had yet verified a dose-response curve. Massachusetts officials, for instance, applied this logic to Woburn.
Our observations of Woburn families and FACE activists, combined with what we know of activists in other sites, tell us that citizen activists can become quite sophisticated about toxic waste issues. Indeed, as we have continually emphasized, community residents are indispensable to the toxic discovery process. To treat them as inferior is not only unfair but also detracts from contributions to scientific knowledge.
Professionalism, Politics, and Economics
When environmental health groups and toxic waste activists challenge the scientific canon of value-neutrality and traditional standards of proof, they attack some core assumptions of professional scientists. By putting forth their own political goals, activists may challenge scientists to acknowledge that they too have political agendas, although covert, unconscious, or unrecognized. Toxic waste controversies often reveal scientists' alignment with corporate interests. For instance, corporate attorneys make much of the charge that citizen activists are untrained and incapable of making valid judgments regarding pollution. 80 This charge fits with the view of many professional scientists. Popular participation threatens not only the division of knowledge and power between laypersons and professionals, but also the corporate system that produces environmental hazards.
Scientists long accepted industry's cost-benefit approach to toxic chemicals. For corporations, the key question was whether it was worth cleaning up the workplace. Public opposition to the toxic waste crisis has made this position less tenable. Thus, more recently, scientists, regulatory agencies, and corporations pursue a "better science," in which there is "endless tinkering with standards." As a result, according to Nicholas Ashford, "we spend $300,000 on animal studies of one chemical, yet never ask if we can substitute something for the chemical. This is just what industry wants us to do." 81
Similarly, scientists in regulatory agencies often accept corporations' research on toxicity without critical evaluation. They may even let corporations test their own toxic contamination sites and implement their own remediation procedures. For instance, in the case of Temik aldicarb pesticide contamination on Long Island, both the EPA and the producer, Union Carbide, ignored warnings that Temik could persist in soil and thus penetrate aquifers. They were relying, at least in part, on data that were not designed to address that particular question. Some scientific studies were concerned only with the relationship be- tween the pesticide and the soil, some with reaction kinetics. Company chemists felt that they had demonstrated that there were no surface water problems and therefore it was pointless to look further. The fact remains, some EPA and state agricultural extension service scientists had warned of dire effects, and officials refused to act on those warnings. Agricultural staffers who requested further data were rebuffed by both Union Carbide and the EPA. After EPA, the public, and the media recognized a crisis, the EPA accepted Union Carbide's request to delay making the results public. Union Carbide was even given responsibility for conducting water sample tests, notifying residents, and providing water filters. 82
Most persons who criticize lay-scientific method believe that science cannot be value-free and that the positivistic methodology of epidemiology serves the interest of those in power. 83 Toxic waste activists are also dissatisfied with the new field of risk assessment, which fails to take into account deeper social and cultural forces. The positivist cost-benefit analysis and psychometric studies of risk assessment cannot provide adequate information on health risks, because both the risks and perceptions of the risks are shaped by economic, ideological, and political concerns. 84 Indeed, the very language of risk is highly subjective and controversial, laden with underlying political theories of society. 85
For instance, in debates over occupational health, industry advocates approach health risks from the assumption that the economic system is reasonable, efficient, and nonexploitative and that illegal practices are the ill-advised acts of the few. Those advocates see conflicts over workplace safety as prompted by uninformed, unscientific, or irrational fears about chemicals. Labor advocates, on the other hand, assume a conflict approach in which industry trades lives for profits. 86
Even when risk-perception research—often conducted by psychologists—does not expressly serve the economic system, it supports existing notions of scientific rationality, in opposition to cultural rationality. Rather than build a culture-based theory of risk perception, psychometricians usually just enter more variables into a single equation, such as voluntary/involuntary, familiar/unfamiliar, human-made/natural. This approach rationalizes "cultural noise" and maintains the dichotomy between expert and lay risk perception. 87
The alleged value-neutrality of risk assessment is further challenged by the fact that corporate and governmental risk-assessment guidelines are for the most part political rather than scientific. Reagan-era deregulation has led to arbitrary reductions in toxic hazards control, accompanied by increases in allowable pollution levels. 88 Thus citizens groups have no stable foundation on which to base their expectations of intervention and redress of grievances.
Scientific and governmental attitudes and practices have not, however, been monolithic. Partly in response to citizen organizing, and partly as a result of scientific and scholarly developments, a growing number of scientific and environmental professionals seek to increase public knowledge and participation. As toxic waste activism is also a social movement, a burgeoning corps of scholars in the social sciences and humanities are refocusing social attitudes toward risk assessment and communication, joined by a small number of epidemiologists and other scientists. 89 Some of these scholars work in tandem with community groups, while others address a more general public.
When scientific, medical, and public health experts become involved in popular epidemiology, it is always in alliance with citizen activists. Indeed, the community activists tend to be the leaders, in contrast to the more formalistic input they offer most state and federal advisory bodies. Although laypersons can learn to utilize expert knowledge and acquire some expert skills themselves, we are concerned that excessively high levels of epidemiological research will become the accepted standard. This would be unfortunate, since most organizations might not be able to marshal the level of research undertaken in Woburn.
In medicine, some practitioners criticize patient involvement in treatment as "antimedical," much as nuclear power proponents hold that antinuclear activists are "antiscientific." Such charges stem from preconceptions rather than a worked-out judgment on the merits of the case. Opponents may similarly accuse popular epidemiology of being antiscientific because it expresses a different concept of what science is, whom it should serve, and who should control it. Environmental health activists want to work with professionals. They have shown their mettle in some very significant cases where their efforts in organizing resources and carrying out research have been invaluable. One survey found that 89 percent of community groups interacted regularly with scientists, and that scientific experts were the main source of information for groups. 90 In Woburn, sympathetic scientists Steven Lagakos and Marvin Zelen were valuable allies, as was Beverly Paigen at Love Canal. Irving Selikoff, well known for his work on asbestos-induced disease, played a large role in the Michigan PBB contamination of cattle feed. 91 Such scientists have cooperated well with lay activists and are either unhampered by the organizational constraints government investigators face or willing to take the risks of being whistle-blowers.
By allying with epidemiologists and other professionals, activists provide valuable inputs. FACE members and SPH scholars constructed the questionnaire in a consensual fashion. Barbara Wessen, who managed the Harvard/FACE study, writes: "The sessions were an educational give and take, at once mini-seminars in statistical and epidemiological methods for the community members and learning sessions for the 'experts.' " In this process, she continues, "FACE people provided creative input in such key areas as the lay phrasing of questions, defining vernacular units of measurement, such as using pounds rather than grams to define low birthweight or defining 'miscarriage' as pregnancy loss before 6 months, and determining endpoints." 92
Community residents can also point experts to additional issues for study, such as community integration and political organization. As in the health care system, lay citizens can receive certain practical training so that they are not completely dependent on professionals. Marvin Legator and his colleagues have written a manual to enable lay groups to do just this—The Health Detectives' Handbook: A Guide to the Investigation of Environmental Health Hazards by Nonprofessionals. 93 The Environmental Action Foundation has also prepared a handbook, Making Polluters Pay: A Citizens' Guide to Legal Action and Organizing, dealing with both legal and health matters. 94 Barry Commoner, one of the earliest scientist activists in environmental affairs, argues that scientists have a special responsibility to inform and educate citizens and to work with them. He cites many successful collaborations, often on public initiative, on such issues as nuclear plants, pesticide controls, air pollution standards, and the mercury pollution of Lake Erie. This partnership, he holds, is "the clue to the remarkable upsurge of public actions on environmental issues." 95
The Activist Nature of Popular Epidemiology
Popular epidemiology is by nature activist, because it involves the lay public in work that should be done by corporations, scientists, and officials. Popular epidemiology activists attack the corporate and governmental status quo. Popular epidemiology includes citizen-propelled investigation of naturally occurring diseases for which no firm is responsible. For instance, Lyme disease (first discovered in Lyme, Connecticut), was spread by deer ticks, but citizen activists became active around the issue because they considered health officials to be dragging their heels in the matter. Nevertheless, popular epidemiology is particularly powerful when the issue is environmental pollution, occupational disease, nuclear power, or drug side effects. In those cases the public sees persons, agencies, and corporations acting against the public health, often with clear knowledge of the dangers. Popular epidemiological investigation is furthermore essentially activist because its findings are immediately employed to alleviate suffering and causes of suffering. Popular epidemiology thus extends beyond the immediate effects of the local pollution. The Woburn plaintiffs' efforts went beyond their personal health problems from toxic waste: by uncovering evidence of Grace's dumping of TCE and other toxics, they aided an EPA investigation that led to a federal grand jury indictment and conviction against Grace for lying to the EPA about that dumping. 96
By definition, environmental health activists act to correct problems that are not resolved by the established corporate, political, and scientific communities. The first logical step in protecting people from the hazards of toxic chemicals is corporate responsibility for the judicious use and safe disposal of toxic chemicals. It is well known that manufacturers are often lax in this sphere and frequently violate established laws and safe practices. For this reason, and because corporations purchase land and factories without knowing what toxic chemicals have been used there in the past, public agencies present the next line of defense. These include state and local boards of health, local water boards, state environmental agencies, and the federal EPA. Laypersons often begin at the agency level rather than the corporate level. But as the case studies of Woburn, Yellow Creek, Legler, South Brunswick, Love Canal, and many other sites indicate, public officials are often skeptical about, even hostile to, the advice and requests of citizens.
Even when public agencies agree to carry out studies, they often demand a different level of proof from what community residents want. Furthermore, agencies tend to undertake "pure" epidemiological research without reference to practical solutions to the problem. Even if they want to, many public bodies have no legal or effective power to compel cleanups, and they rarely can provide restitution to victims. Popular epidemiology emphasizes the practical side of environmental health issues, and activists often become impatient with the cautious approach of public agencies. As in so many other areas of public policy, the fragmentation of agencies and authority contributes to the problem. Community activists cannot understand why more immediate action is not taken, particularly because they are more apt than officials to define the situation as a crisis.
Popular Epidemiology and Social Movements
Because popular epidemiologists consider injurious products or actions a result of corporate and governmental action and inaction, they seek to place blame and responsibility on the appropriate parties and to obtain political, social, and economic redress. In many cases local activism is linked to similar cases around the country and to a specifically focused political movement.
Popular epidemiological projects lead many practitioners to a broader social understanding and political activism in other toxic waste issues on a national level. More than half the groups in Freudenberg's study cited accomplishments that extended beyond their own communities. 97 Activists often start out as citizens who notice that something is wrong; the obstacles imposed by corporations, political leaders, and public health officials force them to become activists. Frank Kahler from South Brunswick, Anne Anderson from Woburn, and Lois Gibbs from Love Canal provide examples.
Not all participants necessarily become full-fledged activists, but a noticeably critical attitude enters into the thinking even of those who do not expand their actions on a larger scale. Our Woburn interviewees, for instance, showed a great deal of antagonism to large corporations and unresponsive officials. Residents who joined the litigation against W. R. grace and Beatrice Foods hoped that their suit would place blame on the corporations and focus attention on their actions in order to prevent future environmental health crises. Public health officials do not share this desire to blame companies; indeed, they shy away from doing so.
All social involvement can lead people to greater politicization. Environmental issues, along with other health issues, have become very salient, in part because of breakdowns in the environment and the social system and in part because of a new awareness. Environmental politics, which originated in natural resource protection, now emphasizes human health and safety. This change merges environmental politics with the tremendously significant health politics of recent years to create a major new social force in American society.
Like social movements in health care, the toxic waste movement stresses the public's right of access to specialized knowledge. Although residents in Woburn and other toxic waste sites struggle on many fronts, their efforts in the arena of scientific knowledge are especially significant. In their challenge to traditional science, they resemble antinuclear activists, the occupational health and safety movement, and the women's health movement, which resulted from and contributed to a public skepticism about the omniscience and beneficence of science and technology.
Popular epidemiology strongly criticizes the traditional view of scientific knowledge. Adherents know that they have made the difference in pinpointing toxic-waste-induced disease. When people realize their own scientific abilities, they develop strong self-esteem and self-efficacy, develop new frames of reference, and feel empowered to challenge political, economic, cultural, and scientific leaders and institutions.
In social composition, toxic waste activism differs from many other social movements, including the older environmentalist movement. Rather than largely middle class and upper middle class, members of toxic waste groups are typically middle or lower middle class. They are less educated and their leaders and members are most often women. 98 Indeed, large population surveys of environmental attitudes demonstrate that unlike other progressive ideologies, environmentalism is weakly related to social class. Summary measures of class do not show clear relationships to environmentalism because the components of those measures (education, income, and occupation) do not correlate in the same direction. Education is only slightly positively related to environmentalism and in some cases inversely related. Persons highest and lowest in income are slightly less pro-environment than those in the middle. Occupation relates to environmentalism by category of occupation, with service sector workers more environmentally oriented than those in the production sector. 99
Also in contrast with other social movements, including the larger environmental movement, toxic waste activism proceeds through local groups. Organizations such as the Citizen's Clearinghouse for Hazardous Wastes offer important publicity and assistance to local groups, but no national membership organization exists. Nevertheless, in the absence of centralized organizations, popular epidemiology activists have managed to draw extensive public attention, because along with local efforts, society has come to see toxic waste as a major social problem. The public has a finite "carrying capacity" for social problems. Activists must compete for public attention, since only a few social problems can attain "celebrity status." 100
The movement has certainly been fortunate in that public attention to toxic waste contamination has grown dramatically in recent years. Not only have toxic waste activists managed to grab attention by their own efforts, but many social institutions agree that environmental degradation is a fundamental concern of our time. The carrying capacities of certain public institutions (for instance, media, government, schools, civil organizations) have grown to absorb the demands for attention to this social problem. Further, the deep-seated significance of toxic wastes involves so many facets of society that through "problem-amplifying feedback," "activities in each arena propagate throughout the others." 101 For example, the public sees toxic waste contamination problems as firmly linked to such important issues as global warming, revisions in economic planning, product recycling and sustainable development, energy and water conservation, and international ozone protection. Thus although the toxic waste movement is distinct from the environmental movement, it has benefited from the larger environmental consciousness of our times.
This larger awareness is tied to public loss of confidence in scientific and governmental authority. Traditional sources of knowledge and authority have failed to prevent these environmental problems. With declining confidence in the scientific community and scientific solutions, there is a public antagonism to the emergence of an "intellectual technocracy" many feel has become an independent power. 102 People affected by toxic waste have already discovered the flaws in traditional science and government; their experiences have rubbed off on the general public as well.
In short, many people no longer accept on faith statements of scientific fact nor see science as an objective and compelling basis for policy-making, especially in the absence of lay involvement. Controversy, such as we see in toxic waste cases, demystifies expertise, exposes technical and political assumptions, and transfers problems from the technical to the political arena. 103 The questioning of science and technology has provided a nourishing medium in which popular epidemiology could develop.
Influencing Future Public Health Practices
Popular epidemiology can become a major influence on public agencies that initially fail to do their work. The Woburn cluster was the major impetus for a new state cancer registry. The Woburn case also played a significant role in the passage of a Massachusetts law to monitor toxic wastes in water supplies. Many other Massachusetts communities have been spurred by the Woburn activism to demand fuller investigation and disclosure of environmental risks. Woburn activists have made public statements about a number of other community sites, and official and media references to the Woburn precedent are commonplace. In 1986, local groups were able to obtain a state legislative order directing the DPH to release the names of nine sites then being studied for excess cancer; before the rise of local activism, the DPH had kept this information secret. 104
Woburn activism has also contributed to research on Woburn itself: as we noted earlier, this research includes a prospective and retrospective study of reproductive outcomes by the Massachusetts DPH and the CDC, a new case-control leukemia study by the DPH, a new water distribution model for wells G and H to be used in conjunction with the reproductive outcomes study and a reanalysis of the Harvard/FACE study, and an MIT study of health effects, including genetic changes resulting from toxic wastes. Environmental activism has led to shifts in EPA practices as well, even though the EPA remains weak and often resists popular initiatives. Woburn residents' testimony was crucial for the \$9 billion reauthorization of the Superfund in October 1986 and contributed to the national attention paid to the Woburn tragedy. Unfortunately, the Reagan era has instigated deregulation in all spheres, and environmental protection is a particular target for cutbacks.
Environmental health hazards have historically been identified and controlled by scientific research and government regulation. But the environmental activism of the past decade has made community groups a potent third force in environmental hazard action. Freudenberg found that community groups believed that they had been successful in meeting their goals: 37 percent said they had been very successful, 46 percent that they had been some-what successful. Almost half reported that they had eliminated or reduced their targeted hazard. 105
Even when government units have felt attacked by community groups, they have sometimes accepted the fact that lay pressure sped up their response to a toxic waste crisis. This was evident, for instance, at the Stringfellow dump site near Santa Ana, California, where the Parents of Jurupa prompted increased monitoring of the well, collection of air and water samples, and the closing of the site. In Legler, New Jersey, the local government, perhaps one of the most contentious, ultimately recognized the activists' actions. 106 Clearly, popular epidemiology and other forms of community involvement have emerged as significant social forces.
Note 1: Abraham Lillienfeld, Foundations of Epidemiology, 2d ed. (New York: Oxford, 1980) p. 4. Back.
Note 2: Sheldon Krimsky, personal communication, Cambridge, Mass., October 11, 1988; Alonzo Plough, personal communication, October 11, 1988. Back.
Note 3: Howard Frumkin and Warren Kantrowitz, "Cancer Clusters in the Workplace: An Approach to Investigation," Journal of Occupational Medicine, 1987, 29:949-952. Back.
Note 4: June Nash and Max Kirsch, "Polychlorinated Biphenyls in the Electrical Machinery Industry: An Ethnological Study of Community Action and Corporate Responsibility," Social Science and Medicine, 1986, 23:131-138. Back.
Note 5: " 'Quiet Triumph' at Hazardous-Waste Site in Jersey," New York Times, May 4, 1986. Back.
Note 6: Nicholas Freudenberg, Not in Our Backyards: Community Action for Health and the Environment (New York: Monthly Review Press, 1984), p. 112. Back.
Note 7: Richard A. Couto, "Failing Health and New Prescriptions: Community-Based Approaches to Environmental Risks," pp. 53-70 in Carole E. Hill, ed., Current Health Policy Issues and Alternatives: An Applied Social Science Perspective (Athens: University of Georgia Press, 1986), at p. 55. Back.
Note 8: Adeline Gordon Levine, Love Canal: Science, Politics, and People (Lexington, Mass.: Heath, 1982), pp. 14-15. Back.
Note 9: Celene Krauss, "Grass-Root Protests and Toxic Wastes: Developing a Critical Political View" (paper presented at the meeting of the American Sociological Association, New York, August 1986). Back.
Note 10: Claire Safran, "The War on Toxic Waste," Newsday, October 4, 1983, p. 49. Back.
Note 11: Ibid. Back.
Note 12: Couto, "Failing Health." Back.
Note 13: Nash and Kirsch, "Polychlorinated Biphenyls." Back.
Note 14: Lonny Shavelson, "Tales of Troubled Waters," Hippocrates, March/April 1988, p. 74. Back.
Note 15: Michael R. Reich, "Environmental Politics and Science: The Case of PBB Contamination in Michigan," American Journal of Public Health, 1983, 73:302-313. Back.
Note 16: Ibid.; Paula DiPerna, Cluster Mystery: Epidemic and the Children of Woburn, Mass. (St. Louis: Mosby, 1985), pp. 93-94. Back.
Note 17: Sam Howe Verhovek, "A Bronx Landfill Raises Concern over Diseases," New York Times, June 27, 1988. Back.
Note 18: Martha Fowlkes and Patricia Y. Miller, "Love Canal: The Social Construction of Disaster" (final report for Federal Emergency Management Agency, January, 1983), p. 70. Back.
Note 19: Ibid., pp. 80-81. Back.
Note 20: Helen Rodriguez-Trias, "The Women's Health Movement: Women Take Power," pp. 107-126 in Victor Sidel and Ruth Sidel, eds., Reforming Medicine: Lessons of the Last Quarter Century (New York: Pantheon, 1984). Back.
Note 21: Daniel Berman, "Why Work Kills: A Brief History of Occupational Health and Safety in the United States," International Journal of Health Services, 1977, 7:63-87. Back.
Note 22: Freudenberg, Not in Our Backyards. Back.
Note 23: Steven W. Lagakos, Barbara J. Wessen, and Marvin Zelen, "An Analysis of Contaminated Well Water and Health Effects in Woburn, Massachusetts," Journal of the American Statistical Association, 1986, 81:583-596. Back.
Note 24: Beverly Paigen, "Controversy at Love Canal," Hastings Center Report, 1982, 12(3):29-37. Back.
Note 25: David Ozonoff and Leslie I. Boden, "Truth and Consequences: Health Agency Responses to Environmental Health Problems," Science, Technology, and Human Values, 1987, 12:70-77. Back.
Note 26: Anders Grimvall and Rolf Ejvegard, "The Dynamics of Scientific Uncertainty and Its Implications for the Use of Conservative Procedures in Risk Analysis," pp. 23-29 in Per Oftedal and Anton Brogger, eds., Risk and Reason: Risk Assessment in Relation to Environmental Mutagens and Carcinogens (New York: Liss, 1986). Back.
Note 27: The discussion of Type I and Type II errors in toxic waste contamination has been independently applied by Couto, "Failing Health"; Paigen, "Controversy at Love Canal"; Levine, Love Canal; and Michael R. Edelstein, Contaminated Communities: The Social and Psychological Impacts of Residential Toxic Exposure (Boulder, Colo.: Westview, 1988). Back.
Note 28: Couto, "Failing Health," p. 216. Back.
Note 29: Fowlkes and Miller, "Love Canal," p. 50. Back.
Note 30: Paigen, "Controversy at Love Canal," p. 32. Back.
Note 31: Ibid. Back.
Note 32: Ibid. Back.
Note 33: Richard Kazis and Richard L. Grossman, Fear at Work: Job Blackmail, Labor, and the Environment (New York: Pilgrim Press, 1982). Back.
Note 34: Edelstein, Contaminated Communities, p. 129. Back.
Note 35: "Cancer Case Reporting and Surveillance in Massachusetts" (Commonwealth of Massachusetts, Senate Committee on Post Audit and Oversight, Boston, September 1987); Barry S. Levy et al., "Improving the Conduct of Environmental Epidemiology Studies" (Worcester: University of Massachusetts Medical School, Department of Family and Community Medicine, Occupational Health Program, 1986). Back.
Note 36: Richard Clapp, "Cancer Statistics and the Right-to-Know" (paper presented at the annual meeting of the American Public Health Association, Boston, November 14-16, 1988). Back.
Note 37: Study Commission on Environmental Health Issues, Final Report (Boston: Massachusetts Department of Public Health, February 1984), p. 39. Back.
Note 38: Ibid., p. 42. Back.
Note 39: Ozonoff and Boden, "Truth and Consequences." Back.
Note 40: Reich, "Environmental Politics." Back.
Note 41: Paigen, "Controversy at Love Canal." Back.
Note 42: Couto, "Failing Health"; Barry Commoner, The Closing Circle: Nature, Man and Technology (New York: Knopf, 1971), pp. 86-87. Back.
Note 43: Malcolm L. Goggin, "Introduction, Governing Science and Technology Democratically: A Conceptual Framework," pp. 3-31 in Malcolm L. Goggin, ed., Governing Science and Technology in a Democracy (Knoxville: University of Tennessee Press, 1986). Back.
Note 44: Paigen, "Controversy at Love Canal." Back.
Note 45: Freudenberg, Not in Our Backyards, p. 57. Back.
Note 46: Eliot Marshall, "EPA's High-Risk Carcinogen Policy," Science, 1982, 218:975-978. Back.
Note 47: Levine, Love Canal; Ozonoff and Boden, "Truth and Consequences." Back.
Note 48: Clapp, "Cancer Statistics." Back.
Note 49: Dan Kennedy, "EPA to Say Pollutants Caused Leukemia," Woburn Daily Times, May 9, 1988. Back.
Note 50: Paigen, "Controversy at Love Canal." Back.
Note 51: Holly Howe, "Predicting Public Concern Regarding Toxic Substances in the Environment" (paper presented at the annual meeting of the American Public Health Association, Boston, November 14-16, 1988). Back.
Note 52: David L. George and Priscilla L. Southwell, "Opinion on the Diablo Canyon Nuclear Power Plant: The Effects of Situation and Socialization," Social Science Quarterly, 1986, 67:722-735. Back.
Note 53: Sheila Jasanoff, "The Misrule of Law at OSHA," pp. 155-178 in Dorothy Nelkin, ed., The Language of Risk: Conflicting Perspectives on Occupational Health (Beverly Hills: Sage, 1985). Back.
Note 54: James H. Rubin, "Justices Limit Right of Citizens to Sue on Water Pollution Violations," New York Times, December 2, 1987. Back.
Note 55: Nicholas Freudenberg, "Citizen Action for Environmental Health: Report on a Survey of Community Organizations," American Journal of Public Health, 1984, 74:444-448. Back.
Note 56: Kurt Finsterbusch, "Citizens' Encounters with Unresponsive Authorities in Obtaining Protection from Hazardous Wastes" (paper presented at the annual meeting of the Society for the Study of Social Problems, Atlanta, Georgia, August 1988). Back.
Note 57: Philip Shabecoff, "Uncertainties of a Chemical-Filled World Come Home to a Denver Suburb," New York Times, April 19, 1987. Back.
Note 58: Ibid. Back.
Note 59: Ibid. Back.
Note 60: Couto, "Failing Health." Back.
Note 61: Levine, Love Canal, pp. 103-104. Back.
Note 62: Safran, "War on Toxic Waste." Back.
Note 63: Shavelson, "Tales of Troubled Waters." Back.
Note 64: Ibid. Back.
Note 65: Reich, "Environmental Politics." Back.
Note 66: John Duncan Powell, "A Hazardous Waste Site: The Case of Nyanza," pp. 239-297 in Sheldon Krimsky and Alonzo Plough, Environmental Hazards: Communicating Risks as a Social Process (Dover, Mass.: Auburn House, 1988). Back.
Note 67: Frances Irwin, "Integrating Pollution Control to Protect Public Health" (paper presented at the annual meeting of the American Public Health Association, Boston, November 14-16, 1988). Back.
Note 68: Barry Rabe, "The Politics of Alternative Dispute Resolution in American Environmental Policy" (paper presented at the annual meeting of the American Public Health Association, Boston, November 14-16, 1988). Back.
Note 69: Goggin, "Introduction." Back.
Note 70: Barbara Wessen, "Participatory Strategies in Community Health Effects Research" (unpublished manuscript, n.d.). Back.
Note 71: Thomas Kuhn, The Structure of Scientific Revolutions (Chicago: University of Chicago Press, 1962). Back.
Note 72: Bruno Latour, Science in Action: How to Follow Scientists and Engineers through Society (Cambridge, Mass.: Harvard University Press, 1987), pp. 99-103. Back.
Note 73: Fowlkes and Miller, "Love Canal," p. 2. Back.
Note 74: Ibid., p. 46. Back.
Note 75: Sheldon Krimsky and Alonzo Plough, Environmental Hazards: Communicating Risks as a Social Process (Dover, Mass.: Auburn House, 1988), pp. 107-108, 302. Back.
Note 76: Alonzo Plough, personal communication. Back.
Note 77: Krimsky and Plough, Environmental Hazards, p. 6. Back.
Note 78: Robert Miller, " 'I'm from the Government and I'm Here to Help You': Fieldwork at Times Beach and Other Missouri Dioxin Sites" (paper presented at the annual meeting of the Society for the Study of Social Problems, San Antonio, Texas, August 1984). Back.
Note 79: Daniel Wartenberg, "Risk Communication and Perception: A Comparative Study of Temik Pesticide in Groundwater in Three Communities" (paper presented at the annual meeting of the American Public Health Association, Boston, November 14-16, 1988). Back.
Note 80: Krauss, "Grass-Root Protests." Back.
Note 81: Nicholas Ashford, "Communicating Technical Solutions" (paper presented at the annual meeting of the American Public Health Association, Boston, November 15, 1988). Back.
Note 82: Daniel Wartenberg, "Groundwater Contamination by Temik Aldicarb Pesticide: The First Eight Months," Water Resources Research, 1988, 24:185-194. Back.
Note 83: Alan F. Chalmers, "Epidemiology and the Scientific Method," International Journal of Health Services, 1982, 12:659-666. Back.
Note 84: Dorothy Nelkin, ed., The Language of Risk: Conflicting Perspectives on Occupational Health (Beverly Hills: Sage, 1985); Langdon Winner, The Whale and the Reactor: A Search for Limits in an Age of High Technology (Chicago: University of Chicago Press, 1986). Back.
Note 85: Bruce Jennings, "Representation and Participation in the Democratic Governance of Science and Technology," pp. 223-243 in Malcolm L. Goggin, ed., Governing Science and Technology in a Democracy (Knoxville: University of Tennessee Press, 1986). Back.
Note 86: Stephen Hilgartner, "The Political Language of Risk: Defining Occupational Health," pp. 25-65 in Dorothy Nelkin, ed., Language of Risk. Back.
Note 87: Krimsky and Plough, Environmental Hazards, p. 303. Back.
Note 88: Jasanoff, "Misrule of Law." Back.
Note 89: See, in particular, Marvin S. Legator, Barbara L. Harper, and Michael J. Scott, eds., The Health Detectives' Handbook: A Guide to the Investigation of Environmental Health Hazards by Nonprofessionals (Baltimore: Johns Hopkins University Press, 1985). Back.
Note 90: Freudenberg, "Citizen Action." Back.
Note 91: Reich, "Environmental Politics." Back.
Note 92: Wessen, "Participatory Strategies," p. 5. Back.
Note 93: Legator, Harper, and Scott, eds., Health Detectives' Handbook. Back.
Note 94: Environmental Action Foundation, Making Polluters Pay: A Citizens' Guide to Legal Action and Organizing (Washington, D.C.: Environmental Action Foundation, 1987). Back.
Note 95: Commoner, The Closing Circle, pp. 197-202. Back.
Note 96: Jan Schlictmann, interview, Boston, May 12, 1987; U.S. Attorney, District of Massachusetts, Press Release, Boston, January 28, 1987. Back.
Note 97: Freudenberg, "Citizen Action." Back.
Note 98: ICF Incorporated, "Analysis of Community Involvement in Hazardous Waste Site Problems," report to the Office of Emergency and Remedial Response, Environmental Protection Agency (Washington, D.C., ICF, 1981), pp. 28-32. Back.
Note 99: Lester Milbrath, Environmentalists: Vanguard for a New Society (Albany: State University of New York Press, 1984), pp. 76-78; Howe, "Predicting Public Concern." Back.
Note 100: Stephen Hilgartner and Charles L. Bosk, "The Rise and Fall of Social Problems: A Public Arenas Model," American Journal of Sociology, 1988, 94:53-78, p. 67. Back.
Note 101: Ibid. Back.
Note 102: Dorothy Nelkin, "Science and Technology Policy and the Democratic Process," pp. 18-39 in James C. Peterson, ed., Citizen Participation in Science and Policy (Amherst: University of Massachusetts Press, 1984). Back.
Note 103: Ibid. Back.
Note 104: Larry Tye, "Critics Say DPH Too Slow to Supply the Crucial Data," Boston Globe, October 13, 1986; Ken Cafarell, "Walker Lists Nine Ongoing Studies of Potential Health Problems," Boston Globe, November 19, 1986. Back.
Note 105: Freudenberg, "Citizen Action." Back.
Note 106: ICF, "Analysis of Community Involvement," pp. 80-83, 99. Back.