Glad You Asked: Participants' Opinions of Re-Consent for dbGap Data Submission

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

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Aged
  • Aged, 80 and over
  • Attitude*
  • Consumer Behavior
  • Data Collection
  • Databases, Genetic*
  • Female
  • Humans
  • Information Dissemination*
  • Informed Consent*
  • Male
  • Research Subjects*
  • Telephone
  • Washington