Glad you asked: Participants’ Opinions of Re-Consent for dbGaP Data Submission

Ludman, E. J., Fullerton, S. M., Spangler, L., Trinidad, S. B., Fujii, M. M., Jarvik, G. P.,Burke, W. | Journal of Empirical Research on Human Research Ethics | September 2010 | NIH Public Access

No consensus exists about when researchers need additional participant consent (re-consent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Reconsent 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 re-consent 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.

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