A Historical Perspective on Breast Cancer Activism in the United States: From Education and Support to Partnership in Scientific Research

Abstract

Breast cancer remained a hidden disease among women in the United States until the 20th century. It was initially brought into the open with public revelations from individual women, which was followed by the development of support groups and ultimately the formation of political activist groups with various priorities. Those concerned with toxic environmental exposures as a potential cause of breast cancer organized, demonstrated, and lobbied for research funding and eventually became partners in the research that arose from their efforts. One representative example was the Breast Cancer and Environment Research Centers (BCERC) Project (2003Project ( -2010, supported by the National Institute of Environmental Health Sciences (NIEHS) and the National Cancer Institute (NCI). The BCERC embedded a Community Outreach and Translational Core into its formal organizational infrastructure to ensure advocate involvement in the standing scientific subcommittees of BCERC, the first project funded by NIEHS and NCI to do so. The formal integration of advocates as partners in scientific studies focused on breast cancer is embedded in a rich history of action on the part of many courageous women. This article describes the historical evolution of breast cancer activism in the United States, which provided a critical foundation for the formation of BCERC. This description is followed by a discussion of BCERC as an example of the transdisciplinary research model, a paradigm that strives for inclusion of multiple stakeholders and increased interaction between scientists from a wide spectrum of disciplines, advocates, and lay audiences in order to more effectively conduct critical research and to translate and disseminate its findings.

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“…A suggested collaborative model that has proved successful in improving models of care in conditions such as breast cancer is community-based participatory research (CBPR), in which patient advocates, clinicians and researchers collaborate in the design of research [17]. One goal of a stakeholder forum might be the development of a community-based participatory research project to create surveys of patient priorities for care and research.…”

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“…Consistent financial and leadership support from academic and private sector institutions is currently lacking but desperately needed to overcome this lack of federal funding for research. Other disease-specific organizations, from breast cancer to suicide prevention, have been successful in raising public awareness and research funding [16,17]; gun violence prevention foundations could learn from this model to raise the financial resources needed to attract research interest and proposals, to motivate communities to stand in solidarity to address this public health crisis, and to help initiate collaborative research teams in hospitals, clinics, and communities around the country. Without reliable funding, motivated investigators will continue to be unable to build careers dedicated to gun violence prevention research.…”

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“…Each partner is empowered through bi-directional learning, and equipped with the necessary tools to implement changes and to document the efforts, successes, and lessons learned. Thus, carefully-executed CER benefits both researchers and the community under study by targeting the appropriate health determinants [60] enabling the translation of science into practice [10, 61] and, hence, addresses health disparities [58, 62]. …”