| Literature DB >> 20831417 |
Evette J Ludman1, Stephanie M Fullerton, Leslie Spangler, Susan Brown Trinidad, Monica M Fujii, Gail P Jarvik, Eric B Larson, Wylie Burke.
Abstract
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.Entities:
Mesh：
Year: 2010 PMID： 20831417 PMCID： PMC3071850 DOI： 10.1525/jer.2010.5.3.9
Source DB: PubMed Journal: J Empir Res Hum Res Ethics ISSN： 1556-2646 Impact factor: 1.742