In 1993, the Massachusetts Department of Public Health published cancer rates by town. Members of the Massachusetts Breast Cancer Coalition, alarmed by reports of elevated breast cancer rates in eleven of fifteen towns on Cape Cod, decided to create a laboratory of their own to investigate the causes. They founded Silent Spring Institute to study the links between the environment and women’s health, beginning with breast cancer. Their background was social activism, not science—and that gave them an advantage.
“We didn’t want science as usual,” says Ellen Parker, chair of Silent Spring Institute’s Board of Directors. “We didn’t want to fund scientists who would go away and then come back with a report ten years later. And we wanted the community—especially women with breast cancer—to participate in the process.”
When they formed Silent Spring Institute, Parker says, the founders realized that it would be an innovative model. “To have the community partaking in the research and helping to define the research agenda is a powerful paradigm,” she says. “It was a new experience for the scientists to work so closely with activists and the people affected by the illness they were studying. At first some scientists worried that the activists’ involvement would compromise the science, but that turned out not to be true.”
During its first three years, the Institute developed a strong scientific team to lead the Cape Cod Breast Cancer and Environment Study and the Newton Breast Cancer Study, with funding from the Massachusetts Department of Public Health; in 1998, the Institute won a second three-year grant for the Cape Cod Study.
Among its many initiatives since then have been household exposure studies on Cape Cod and in northern California, a study of the marketing of personal care products containing endocrine disruptors to women since the 1950s, the development of an online computer-mapping program for Massachusetts, a study of the discharge of hormone-disrupting chemicals from sewage into groundwater, a comprehensive review of environmental factors and breast cancer, and an analysis of the ethical issues surrounding the reporting personal exposures to environmental chemicals.
The Institute has also developed productive collaborations with researchers at a number of universities, as well as the U.S. Centers for Disease Control and Prevention. “As an independent scientific institute, Silent Spring has avoided the turf wars of academic institutions,” Parker says. “We’ve been able to bring together people who had been researching the same angles but had never collaborated. Even years later, bench scientists are coming up to us and saying, ‘Do you understand what you’ve accomplished? We had never even talked with each other before.’”
Complementing the science has been the activism, fueled in part, Parker says, by the need to follow the precautionary principle. This principle states that evidence of harm, rather than definitive proof of harm, should prompt policy action—and that the burden of proof should lie with manufacturers to demonstrate that chemicals are safe, rather than with the public to show that they cause harm.
“We were so naive when we began our activism,” Parker says, “that we were surprised to learn that the burden was on proving the evil of chemicals rather than their safety. The more we learned, the more we realized that breast cancer is a political disease, and that we could support the Institute’s work by focusing much of our energies on trying to ensure that the precautionary principle is implemented.” As an essential part of this strategic vision, the Institute seeks not only to conduct its own leading-edge research, but also to influence the research and public policy agenda nationally.