Great expectations: views of genetic research participants regarding current and future genetic studies.
OBJECTIVE
Recruitment of prior participants in genetic research is one strategy suggested to maximize efficient use of research dollars in gene-environment studies. We explored attitudes toward genetic research participation among people in a case-control genetic epidemiology study of colon cancer, the North Carolina Colorectal Cancer Study (NCCCS).


METHODS
Quantitative and qualitative cross-sectional analysis of 801 NCCCS participants.


RESULTS
Participants were "very positive" (63%) or "positive" (32%) about genetic research, and "very likely" (49%) or "somewhat likely" (40%) to participate in future genetic research. Variables significantly associated with feeling "very positive" were white race, more education, nonreligious, hearing "a lot" about genetic research, and two measures of trust in medical research. Except for race and education, the same variables were significantly associated with being "very likely" to participate in future studies. Qualitatively, "good things" for self and family included discovering causes and cures for cancer, and the value of genetic information. Many could not list "bad things"; those who did mentioned anxiety, "knowing too much," losing confidentiality, or abuse of information.


CONCLUSIONS
Despite very positive attitudes of these participants toward genetic research, there is significant variation based on participant characteristics. These findings should encourage and caution researchers attempting to recruit prior participants into genetic studies.
Henderson
Gail
G
Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina 27599-7240, USA. ghenders@med.unc.edu
Garrett
Joanne
J
Bussey-Jones
Jada
J
Moloney
Mairead Eastin
ME
Blumenthal
Connie
C
Corbie-Smith
Giselle
G
D003430:Cross-Sectional Studies; D032984:Ethics, Research; D036281:Genetic Research; D006801:Humans; D017720:Molecular Epidemiology; D035842:Research Subjects / Q000523:psychology*