Academic journal article Environmental Health Perspectives

A Review of Advocate-Scientist Collaboration in Federally Funded Environmental Breast Cancer Research Centers

Academic journal article Environmental Health Perspectives

A Review of Advocate-Scientist Collaboration in Federally Funded Environmental Breast Cancer Research Centers

Article excerpt

BACKGROUND: The Long Island Breast Cancer Study Project was the first federally funded study of environmental causes of breast cancer. Although advocates were expected to participate in this study, the details of their participation were not adequately clarified in project guidelines, which resulted in confusion over their role in the project. The Breast Cancer and Environment Research Centers (BCERCs) are funded by the National Institute of Environmental Health Sciences and the National Cancer Institute; these centers continue to conduct research into environmental links to breast cancer and to clarify advocate-scientist guidelines for collaboration.

OBJECTIVES: Practitioners in community-based participatory research (CBPR) are grappling with how to improve CBPR projects for all groups involved in breast cancer and environmental studies. The ever-growing body of literature on CBPR elaborates on a number of factors that make CBPR particularly challenging, specifically regarding partnerships between advocate and scientific communities. This study draws on CBPR principles to evaluate advocate-scientist collaboration in the BCERCs.

METHODS: We conducted surveys at BCERC annual meetings in 2005 and 2007 and 11 in-depth open-ended interviews with key stakeholders such as primary investigators within the centers to assess the perceptions of the advocates and scientists regarding collaboration between advocates and scientists who were engaged in CBPR studies.

RESULTS: We found that although participatory guidelines were a focus of BCERCs, underlying differences between advocates and scientists with regard to paradigms of scientific inquiry, priorities, and desired outcomes need to be addressed for more effective collaboration to take place.

CONCLUSION: Our findings contribute to the broader CBPR literature by highlighting the role of underlying assumptions that may hinder the collaborative process and suggest the need for continued assessment research into participatory research projects on breast cancer and the environment.

KEY WORDS: collaborative research, community-based participatory research, environmental breast cancer research. Environ Health Perfect 118:1668-1675 (2010). doi:10.1289/ehp.0901603 [Online 9 July 2010]

doi:10.1289/ehp.0901603

The higher-than-average incidence of women with breast cancer in particular regions of the United. States, especially in parts of New York, Massachusetts, and California, has motivated a push for scientific research into potential environmental causes of breast cancer (Brody et al. 2005; Brody and Rudel 2003; Brown et al. 2001, 2006; Eisenstein 2001; McCormick et al. 2004). Many women in these areas began seeking answers about why breast cancer rates seemed to be so high where they lived and advocated for increased scientific research into environmental factors that might explain the apparent spike in breast cancer incidence. Their persistence has generated a trajectory of research involving breast cancer advocates, many of whom have been largely responsible for new funding for research on potential environmental causes of the disease. Nevertheless, advocates have raised questions over the years about challenges to and effectiveness of participatory research structures and practices in these cases and others (McCormick et al. 2004).

The National Institute of Environmental Health Sciences (NIEHS) and the National Cancer Institute (NCI) created the Breast Cancer and Environment Research Centers (BCERCs) with the intention of adhering to effective participatory practices, although never specifically stating that they would adhere to community-based participatory research (CBPR) principles. CBPR projects have proven challenging, particularly with regard to advocate collaboration with scientists and researchers (Israel et al. 1998, 2005; Minkler 2005; Minkler and Wallerstein 2008). CBPR researchers and practitioners have found that the relationship between advocate and scientist participants in such projects is often strained because of a variety of issues including advocates' lack of trust in scientists, advocates' lack of training in and understanding of scientific research, and mutual frustration with the collaborative process (Israel et al. …

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