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Research By the People

Families of the leukemia victims were the first to discern a geographical pattern in the proliferation of disease

Two decades ago, children in Woburn, Massachusetts, were contracting leukemia at alarming rates. Other childhood disorders, such as urinary tract and respiratory disease, were also unusually common, as were miscarriages. Families of the leukemia victims were the first to discern a geographical pattern in the proliferation of disease. Anne Anderson, whose son had leukemia, began gathering information about other sick children based on chance meetings with victims' families and word of mouth. She theorized that the proliferation had something to do with the town water supply and asked state officials to test the water. She was rebuffed.

The affected 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 gave major impetus for reauthorizing federal Superfund legislation that provides for cleaning up the United States' worst toxic waste sites.

Two key factors led to this outcome: 1) victims and their families organized and worked together, and 2) they were able to enlist the help of several scientists at the Harvard School of Public Health, who conducted crucial research both with and on behalf of the affected families. The Woburn case is an example of what community-based research can accomplish.

Presently, across the world, most research is conducted on behalf of private enterprise, the military, 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 privileged positions.

In contrast with this prevailing undemocratic model, “community-based research” is rooted in the community, serves a community's interests, and frequently encourages citizen participation at all levels.

One of the world's most highly evolved systems for conducting community-based research operates in the Netherlands. Over the past 25 years, the 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 per year.

Graduate and undergraduate students perform much of the work under faculty supervision, and they frequently receive university credit, often turning their investigations into theses or adjusting their career plans to reflect a new-found sensitivity to social problems. Because both students and faculty are doing what they would be doing as part of their regular 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 and in other nations. Some US models already exist and have resulted 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 including the members as research subjects; replacement of poisoned drinking water with safe water in a rural Kentucky community; and others.

In 1994, Pepsico announced that, following two years of market research conducted among 5,000 people, it would spend a further $50 million to reinvent its Doritos®-brand tortilla chip – intensifying the flavor on the outer surface, rounding the chip's corners, and redesigning the package. This expenditure represents approximately five times the total annual US investment in community-based research.

In 1998, the US is scheduled to spend $41 billion on military R&D. For the cost of just one B-2 bomber, the US could increase expenditure on community-based research 100-fold for one year and still have $500 million left over.

In short, the US not only needs, but can easily afford more community-based research.


Richard Sclove is the author of Democracy and Technology and director of the nonprofit Loka Institute.

Madeleine Scammell is project director at the Loka Institute, which is working to establish a US Community Research Network. (see page 34).

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