As the Human Genome Project develops beyond the mapping and sequencing of the human genome to a tool for understanding genetic variation, gene-environment interaction and disease expression, the need for a large and diverse group of research participants is critical. Yet, populations that suffer the consequences of health disparities may be difficult to recruit into research studies because of distrust and concerns about the motives of researchers, themes that may be amplified in genetic research. The proposed study, Project LeARN (Learning About Research in North Carolina), will build on a series of well established population based studies of the genetic, environmental and behavioral predictors of colorectal cancer among African American and white cases and controls, the North Carolina Colorectal Cancer Study (NCCCS), to understand participants' views of genetic variation research. Project LEARN contains both a longitudinal component to assess change in beliefs about causality as a result of participation in NCCCS, and a cross-sectional component to examine NCCCS participants' motivations, assessment of positives and negatives and understanding of genetic variation research. The proposed study will survey 832 NCCCS study participants with the following specific aims, to describe: 1) NCCCS participants' perceptions of causality of colorectal cancer and how perceptions of causality of colorectal cancer change after participation in the NCCCS determinants of colorectal cancer interview; 2) what motivates research participants to participate in the NCCCS study; 3) NCCCS participants' perceptions of positives and negatives related to collecting genetic data in epidemiologic research; and 4) how NCCCS research participants understand the purpose of the NCCCS research.
All aims will be examined for differences by disease status and race/ethnicity. The proposed research is significant in that it is directly responsive to RFA-HG-02-003; involves a population-based examination of lay perceptions, interpretations, and concerns about genetic variation research; and includes participants actually involved in such research. The proposed research will fill a significant gap in the current understanding of how research participants view genetic variation research. Such information should enable development of more effective strategies for increasing the potential benefits of genetic variation research, while at the same time reducing the potential risks.
| Bussey-Jones, Jada; Garrett, Joanne; Henderson, Gail et al. (2010) The role of race and trust in tissue/blood donation for genetic research. Genet Med 12:116-21 |
| Bussey-Jones, Jada; Henderson, Gail; Garrett, Joanne et al. (2009) Asking the right questions: views on genetic variation research among black and white research participants. J Gen Intern Med 24:299-304 |
| Corbie-Smith, Giselle; Blumenthal, Connie; Henderson, Gail et al. (2008) Studying genetic research participants: lessons from the ""Learning About Research in North Carolina"" study. Cancer Epidemiol Biomarkers Prev 17:2019-24 |
| Sterling, Rene; Henderson, Gail E; Corbie-Smith, Giselle (2006) Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health 96:1971-8 |
