Community-Based Research: Scientific Power to the People

Two decades ago, children in Woburn, Massachusetts, were contracting leukemia at alarming rates. Other ailments, such as miscarriages, urinary tract disorders, and respiratory diseases, were also unusually common, but families of the children with leukemia were the first to discern a geographical pattern in the proliferation of disease. Chance meetings with other victims’ families prompted one resident, Anne Anderson, whose son had leukemia, to begin gathering information about sick children in the community. Her research led her to theorize that the proliferation of the disease had something to do with the town’s water supply. She asked state officials to test the water. She was rebuffed.

The affected Woburn families responded by initiating their own epidemiological research. Eventually, they were able to establish the existence of a cluster of leukemia cases and then relate it to industrial carcinogens in the water supply. Their civil suit against the corporations responsible for the contamination resulted in an $8 million out-of-court settlement and spurred reauthorization of federal Superfund legislation aimed at cleaning up the country’s worst toxic waste sites.

There are two key factors in the Woburn families’ success: The victims and their families organized and worked together, and they enlisted the help of scientists at the Harvard School of Public Health, who conducted crucial research both with them and on their behalf. The Woburn case is a high-profile example of what community-based scientific research can accomplish.

Right now, around the world, most research is conducted on behalf of private enterprise, the military, and national governments, or in pursuit of the scientific community’s intellectual interests. Consequently, research agendas often favor elite groups, and–wittingly or not–help them maintain their privileged positions.

In contrast to this prevailing undemocratic model, community-based research is rooted in the community, serves a community’s interests, and encourages citizen participation at all levels.

One of the world’s most extensive systems for conducting community-based research is in the Netherlands. Over the past 25 years, 13 Dutch universities have established a network of several dozen community research centers (or “science shops”) that conduct research on social and technological issues in response to specific questions posed by community groups, public-interest organizations, local governments, and workers. Today, the shops provide answers to about 2,000 inquiries each year.

Graduate and undergraduate students perform much of the research under faculty supervision, and they frequently receive university credit for their work, often turning their investigations into theses. Because both students and faculty are doing what they would be doing as part of their regular academic workloads, the extra cost and time are minimal. The difference is that project results are not simply filed away and forgotten; instead, they help people in the real world address important social problems.

The time is ripe to try something similar in the United States. Some examples already exist and have resulted, for instance, in energy conservation retrofits of over 10,000 low-income housing units in Chicago; a requirement that scientists seek permission from a Native American community before using its members as research subjects; and replacement of poisoned drinking water with safe water in a rural Kentucky community.

Consider what else might be accomplished if community-based research were funded at the same level as, say, PepsiCo’s proposed $50 million effort (after two years of market research involving 5,000 people) to reinvent its Doritos tortilla chip. This would be five times the current total annual U.S. investment in community-based research. Or what if this democratic vision of science received the same level of funding as just one B-2 bomber? That would amount to a hundredfold increase with $500 million left over.

In short, the United States not only needs, but also can easily afford more community-based scientific research. Indeed, the rather modest investment of tax dollars or foundation money offers ample returns in social improvements.

From Yes! A Journal of Positive Futures (Summer 1998) Subscriptions: $24/yr. (4 issues) from Box 10818, Bainbridge Island, WA 98110-0818.

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