Engaging the experts: Popular science education and breast cancer activism

Abstract

In the early 1990s, breast cancer activists in the United States challenged the scientific establishment to include lay activists in the inner circles of science policy making. Within a few years, activists' demands extended beyond policy to inclusion in the everyday practices of science, that is, in the formulation of research questions, the design of scientific studies and the review of scientific grant proposals. While some activists refer to themselves as consumers, their participation in the practices of science has taken them beyond the narrow framework of consumption and cast them as producers, rather than simply consumers, of scientific knowledge. This paper describes a science education program organized by breast cancer activists to prepare them for involvement in the scientific arena. The specific goals of this educational program are to teach basic concepts of biology and epidemiology and critical appraisal of scientific literature and research studies, as well as to examine the institutional practices of science. By simultaneously engaging with the content and the politics of science in Project LEAD, breast cancer activists acquire tools that allow them not only to influence science policy but to evaluate the truth claims of science. In the process, they take a more active and direct role in determining the nature of knowledge produced about breast cancer.