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Studying Genetic Research Participants: Lessons from the "Learning About Research in North Carolina" Study

Departments of ¹ Social Medicine, ² Medicine, and ³ Health Behavior and Health Education; ⁴ Cecil G. Sheps Center for Health Services Research; and ⁵ Center for Gastrointestinal Biology and Disease, University of North Carolina, Chapel Hill, North Carolina; and ⁶ Emory University School of Medicine, Atlanta, Georgia

Requests for reprints: Giselle Corbie-Smith, Cecil G. Sheps Center for Health Services Research, University of North Carolina, 725 Martin Luther King Jr. Boulevard, Chapel Hill, NC 27599. Phone: 919-843-6877; Fax: 919-966-3811. E-mail: gcorbie{at}med.unc.edu

Given the prohibitive cost of recruiting large and diverse populations for genetic explorations in cancer research, there has been a call for genetic studies to engage existing cohorts of research participants. This strategy could lead to more efficient recruitment and potentially result in significant advances in the understanding of cancer etiology and treatment. The Learning About Research in North Carolina (LeARN) study responded to the National Human Genome Research Institute interest in research on how study participants from diverse populations who had participated in genetic research perceived the risks and benefits of participating in combined epidemiologic-genetic research, how well they understand the purpose of the research and the uses to which the research results may be put, and how involvement in such research affects perceptions of disease causality. In this article, we give an overview of the LeARN study, summarizing the methods we used, challenges we encountered, and lessons learned about recruiting participants who have previously participated in genetic research. (Cancer Epidemiol Biomarkers Prev 2008;17(8):2019–24)