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Chapter 5: Democratizing Science
- Temple University Press
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❖ K ari1 grew up in beautiful Washington State in a small town down the street from the Hanford Nuclear Site. Every day as she entered school, Kari walked by a poster of a mushroom cloud, a testament to the power and danger of the facility nearby. Some afternoons when she was alone in the house, Kari would answer the phone to hear the Hanford nuclear emergency test phone call shouting, “Red alert! Please stand by for roll call!” This monthly test and the nuclear threat were a part of normal life, much as the growing number of cancer deaths was becoming routine to people across the country. When her father died of cancer at age forty-eight, the hazard that had seemed in some ways so far away became closer to home than Kari had ever imagined it would. In her first job after college as an environmental reporter and then during her graduate work in environmental psychology, it became increasingly clear to Kari that more often than not the causes of environmental problems and cancer deaths were obvious. But getting people to take care of the obvious problem was a political challenge . Often the powerful interests that caused the problem would attempt to make the threat seem like a far-off hazard. She began to learn more about how people psychologically distanced themselves from the increasing number of risky technologies that they 1 The name has been changed to protect anonymity. Democratizing Science 5 96 ▪ Chapter 5 encountered every day. She saw how individualizing environmental protection by putting on safety gear made this distancing process easier and hence slowed political action that at-risk groups might take. She saw that both this public perception of risk and the way that science portrayed risk were pivotal to either generating or slowing political change. So when Kari became the director of a project where researchers and activists together examined environmental causes of breast cancer, it was no surprise. She had chosen to become a part of making research an avenue to political action. Around the same time Kari formed her research team, Linda2 was diagnosed with breast cancer. She was forty-two. Like most women when they are first diagnosed, she was no activist. She was a doctor practicing psychiatry in Boston. But the mental challenges she underwent after diagnosis—denial, grief, anger—were hard to handle . One day, soon after she began to accept her diagnosis, Linda sat outside in the famous Faneuil Hall area of downtown Boston. It was a typically cloudy summer day. What made it different were the hundreds of women dressed in bright pink shirts carrying placards and banners on the street below. This was the first major breast cancer rally in Massachusetts, the moment in which breast cancer became publicly known as an epidemic in that state. Drawn in chalk on the black concrete was the shape of Massachusetts . The rally organizers asked all women with breast cancer to come out of their seats and step into the map. Remembering, Linda said: So many people came out of the stands, I couldn’t believe it. Young women, old women, black women, white women. I was flabbergasted. It was at that point that I said to myself, “When I went to medical school breast cancer was rare.” I’m 42. I don’t have a family history. I suddenly have breast cancer . I’m looking around at hundreds of women who have breast cancer and this isn’t rare. That was 1991, the same year in which she joined the board of the Massachusetts Breast Cancer Coalition. The next year, in 1992, the Department of Defense (DOD) initiated the Breast Cancer Research Program, run under the Congressionally Directed Medical Research Programs (CDMRP). True to its title, this program was created so 2 The name has been changed to protect anonymity. [174.129.190.10] Project MUSE (2024-03-29 14:46 GMT) Democratizing Science ▪ 97 that Congress could mandate certain types of health research. In 1993, Congress appropriated $210 million to peer-reviewed breast cancer research. This type of research, which requires that proposals be evaluated by a panel of experts for their merit, was not unusual. What was striking was the inclusion of women with breast cancer on review boards. Activists had demanded that they be able to influence what research was done, and Congress had mandated that advocates sit on panels that reviewed DOD-funded scientific proposals. The Breast Cancer Research Program (BCRP) was...