TY - JOUR
T1 - Studying genetic research participants
T2 - Lessons from the "learning about research in North Carolina" study
AU - Corbie-Smith, Giselle
AU - Blumenthal, Connie
AU - Henderson, Gail
AU - Garrett, Joanne
AU - Bussey-Jones, Jada
AU - Moloney, Mairead
AU - Sandler, Robert S.
AU - Lloyd, Stacey W.
AU - Dorrance, Jessica
AU - Darter, Jane
PY - 2008/8
Y1 - 2008/8
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=54049155195&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=54049155195&partnerID=8YFLogxK
U2 - 10.1158/1055-9965.EPI-07-2868
DO - 10.1158/1055-9965.EPI-07-2868
M3 - Article
C2 - 18708393
AN - SCOPUS:54049155195
SN - 1055-9965
VL - 17
SP - 2019
EP - 2024
JO - Cancer Epidemiology Biomarkers and Prevention
JF - Cancer Epidemiology Biomarkers and Prevention
IS - 8
ER -