Snapshot: The Popular Epidemiologists of Woburn, Massachusetts (Read)

During the mid to late 1970s, residents of Woburn, Massachusetts became concerned by the unusually high incidence of childhood leukemia, cancer and other illnesses in their community. Woburn had a long history of problems with water contamination from tanning factories and chemical plants. Residents had complained before about water discoloration, foul odor, and bad taste. Volatile organic compounds (VOCs) had been detected but public health officials did not further pursue the issue.

Anne Anderson, whose son was diagnosed with acute lymphocytic leukemia, began meeting with other leukemia victims in town at the hospital. She initially struggled to convince other residents that the cancer was linked to water contamination. But two studies found that levels of chemical pollutants like trichloroethylene (TCE) and perchloroethylene (perc or PCE), lead, arsenic, and chromium were much higher than permitted levels. Other community members began to help Anne. One resident placed an advertisement in a local newspaper to collect community knowledge on childhood leukemia cases. A local doctor helped to prepare a questionnaire and plot reported cases on a map. They found that many cases clustered around a location.

Anne and others faced other challenges. The Massachusetts Department of Public Health (DPH) published mortality data to contradict the residents’ claims. The residents realized that they needed to form a group. They formed For a Cleaner Environment (FACE) to pursue government support and connect with other toxic waste advocacy groups. In the face of even more contradictory data from DPH, FACE began working with biostatisticians from the Harvard School of Public Health to design a health study that focused on birth defects and reproductive disorders. This helped to lend scientific credibility to FACE’s efforts. They conducted just over 5,000 telephone surveys that included around 57% of Woburn residences. Hundreds of community volunteers were recruited and trained to conduct the surveys.

Woburn community members filed a $400 million civil lawsuit against two corporations in 1982, W. R. Grace and Company, and Beatrice Foods. The results of the FACE and Harvard School of Public Health study were published in 1984 and showed that children with leukemia received, on average, a greater percentage of their yearly water supply from municipal wells. Children without leukemia received a smaller percentage of water from those wells. However, this data was not used in the trial, in which the causal link between pollution and illness was not even assessed. Beatrice Foods was acquitted and W.R. Grace and Company paid only $8 million. Even the Harvard School of Public Health's Department of Epidemiology rejected the study’s findings as biased.

Woburn has now become a model for popular epidemiology, a type of research in which laypeople work with scientists to understand the distribution and causes of illnesses, including their environmental origins. Popular epidemiology is one of several types of scientific research that includes public participation. Other variants include citizen science, civic science and community-based participatory research (CBPR).

The case of Woburn shows that scientific research is often tied to corporate and political interests. Scientific inquiry is shaped by social forces, such as economic interests, political pressures, media influence, and social activism. On a practical level, scientific research is also limited by financial and personnel resources, as well as the problems that are deemed worthy of study (as demonstrated by the kinds of public health data that are available). This can act as a challenge for citizen scientists that challenge traditional scientific approaches while also seeking acceptance from government agency officials in order to galvanize support and resources. Many communities attempting to document hazards and disease are also deterred by an insufficient number of cases to achieve statistical significance.