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J Empir Res Hum Res Ethics. 2010 Sep;5(3):9-16. doi: 10.1525/jer.2010.5.3.9.

Glad you asked: participants' opinions of re-consent for dbGap data submission.

Author information

1
Group Health Research Institute, USA. ludman.e@ghc.org

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.

PMID:
20831417
PMCID:
PMC3071850
DOI:
10.1525/jer.2010.5.3.9
[Indexed for MEDLINE]
Free PMC Article

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