This dissertation analyzes the current era of activist-scientist collaborations on environmental causes of breast cancer. The guiding questions are: As women's health organizations in the U.S. are becoming institutionalized within biomedical research, how are these alignments shaping knowledge on women's health? What bearing do the collaborations and products of research have on activist/advocacy organizations?
The primary site of data collection was the Breast Cancer and the Environment Research Centers (BCERC). Beginning in 2003, BCERC is studying how environmental exposures might cause early pubertal onset in girls and breast cancer. It is one of the most collaborative research projects funded by the NIH to date. My data consisted of 22 in-depth interviews with researchers and advocates, observations at conferences and meetings, and a content analysis of 54 newspaper articles from 2005-2008 discussing toxins, early puberty, and breast cancer. Peer-reviewed medical journals and breast cancer advocacy websites supplemented my data.
This dissertation is informed by grounded theory and social worlds methodologies, and by situational analysis. I engage biomedicalization, feminist science studies theories, and health social movements, including the growing body of literature on public understandings of science.
I observed that the research being produced by scientists and activists is painstaking, slow, and difficult to interpret. As a consequence, the collaborations themselves are being discussed as major contributions, for they can be analyzed and discussed by researchers and advocates as they unfold. My content analysis data highlighted implicit lines of discussion among scientists, advocates, and popular newspapers. Scientists portrayed journalists as popularizing issues without adequately conveying results, and journalists criticized scientists for not providing enough information on avoiding exposures. The content analysis emphasized difficulties in distinguishing inside/outside boundaries in science.
The central story of this dissertation follows the advocates as they renegotiate boundaries of expertise and claim recognition as scientific researchers in their own right. As Callon (1999) has argued, when advocacy groups push for and claim roles in shaping research, their collective identities strongly influence the knowledge that becomes co-produced. With the rise of cooperative formats of breast cancer research, new boundaries are being drawn around “what counts” as science.