DNA data sharing: research participants' perspectives.
OBJECTIVE
Current genomic research policy calls for public data release with specific consent for data sharing. Because most clinical investigators are not responsible for and do not anticipate data broadcast few include information about data sharing in their informed consent process. Model language is therefore urgently needed and should be responsive to research participants' attitudes and judgments. The purpose of this study was to describe research participants' attitudes and judgments about data release and their preferences for varying levels of control over decision-making.


METHODS
Focus group sessions with patients and controls from a genetic study of epilepsy.


RESULTS
Despite wide variation in judgments, there was general interest in receiving information and making decisions about data sharing. Participants preferred multiple data sharing options, but were more likely to consent to public data release when given fewer options. For existing samples most participants felt that genomic information should not be publicly released without explicit consent from research participants.


CONCLUSIONS
Specific information about data sharing ought to be included in the consent process for all genetic research. These participants desire multiple data release options, but the effect, if any, on consent to public release deserves further investigation.
McGuire
Amy L
AL
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA. amcguire@bcm.edu
Hamilton
Jennifer A
JA
Lunstroth
Rebecca
R
McCullough
Laurence B
LB
Goldman
Alica
A
D000293:Adolescent; D000328:Adult; D000368:Aged; D003219:Confidentiality; D003299:Cooperative Behavior; D004247:DNA / Q000235:genetics*; D004827:Epilepsy / Q000235:genetics; D005260:Female; D036281:Genetic Research; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D012108:Research Personnel; D035842:Research Subjects
D004247:DNA