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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.
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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. 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.
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.
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. 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." 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." This "street-wise or creek-side environmental monitoring" 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. Residents of South Brunswick, New Jersey, noticed foul-tasting water and saw barrels labeled "toxic chemicals" dumped, bulldozed, and ruptured.
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." 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."
Out of such observations, people develop "common sense epidemiology," 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. 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."
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.
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.
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.
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." A number of other Love Canal residents reported changes in their family's health after their official relocation.
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.
Excerpted from No Safe Place by Phil Brown Edwin J. Mikkelsen Copyright © 1990 by Regents of the University of California . Excerpted by permission.
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