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Glad You Asked: Participants' Opinions Of Re-Consent for dbGap Data Submission
Evette J. Ludman, Stephanie M. Fullerton, Leslie Spangler, Susan Brown Trinidad, Monica M. Fujii, Gail P. Jarvik, Eric B. Larson and Wylie Burke
Journal of Empirical Research on Human Research Ethics: An International Journal
Vol. 5, No. 3 (September 2010), pp. 9-16
Published by: Sage Publications, Inc.
Stable URL: http://www.jstor.org/stable/10.1525/jer.2010.5.3.9
Page Count: 8
You can always find the topics here!Topics: Genetics, Medical research, Data sharing, Research studies, Genetic research, Institutional review boards, Genomics, Depth interviews, Informed consent, Experimental data
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No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with the reconsent process; 365 participants completed the survey. Respondents reported that it was very (69%) or somewhat (21%) important that they were asked for their permission. Many respondents considered alternatives to consent, such as notification-only or opt-out, to be unacceptable (67% and 40%, respectively). These results suggest that re-consent for dbGaP deposition may be advisable in certain cases to anticipate and honor participant preferences.
Journal of Empirical Research on Human Research Ethics: An International Journal © 2010 Sage Publications, Inc.