Establishing a community partnership to optimize recruitment of African American pedigrees for a genetic epidemiology st
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ORIGINAL ARTICLE
Establishing a community partnership to optimize recruitment of African American pedigrees for a genetic epidemiology study Heather M. Ochs-Balcom & Elisa M. Rodriguez & Deborah O. Erwin
Received: 3 March 2011 / Accepted: 30 June 2011 / Published online: 9 July 2011 # Springer-Verlag 2011
Abstract We developed a breast cancer genetic epidemiology study in collaboration with a community partnership to optimize recruitment and participation of African American women. We recognized that recruitment of relatives for a family-based study was a unique challenge in this minority group in the USA. Through an established partnership with The National Witness Project, we convened focus groups to identify potential recruitment challenges and issues related to decisions about study participation that may be unique to African Americans and family-based recruitment. Using the PEN-3 model, we analyzed qualitative data and applied the thematic findings to our recruitment protocol in order to mitigate potential recruitment challenges. The most relevant positive themes included a need for research and education and potential benefit to future generations. Negative themes included communication barriers in sharing disease status within a family and historical issues such as fatalistic attitudes and shamefulness of cancer. Collaboration with H. M. Ochs-Balcom (*) Department of Social and Preventive Medicine, School of Public Health and Health Professions, University at Buffalo, 270 Farber Hall, Buffalo, NY 14214-8001, USA e-mail: [email protected] E. M. Rodriguez Department of Behavioral Science and Community Health, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA D. O. Erwin Office of Cancer Health Disparities Research, Department of Cancer Prevention and Population Sciences, Roswell Park Cancer Institute, Buffalo, NY, USA
community partners allowed for development of culturally appropriate recruitment strategies for African American breast cancer survivors and their family members for a genetic epidemiology study. Understanding factors unique to family-based recruitment in the USA is a significant factor in enhancing participation of under-represented minorities in future genetic studies. Keywords African American . Genetic epidemiology . Study design . Family study . Community-based research
Introduction In the USA, women of African ancestry have higher incidence of pre-menopausal breast cancer and higher mortality compared to women primarily of European ancestry (Ries et al. 1975). Studies show that for women diagnosed at the same stage, African American women have higher mortality (Eley et al. 1994; Elledge et al. 1994). The lack of engagement with the African American community in ongoing research and resulting lower participation rates in research studies is recognized as a crucial factor in the overall effectiveness and progress in the study of disparities in breast cancer mortality as well as overall health disparities in the USA. African Americans are histori
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