title: Glad you asked: participants' opinions of re-consent for dbGap data submission.
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.
authors.affiliation: Group Health Research Institute, USA. ludman.e@ghc.org
authors.forename: Evette J
authors.initials: EJ
authors.lastname: Ludman
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Fullerton
authors.forename: Leslie
authors.initials: L
authors.lastname: Spangler
authors.forename: Susan Brown
authors.initials: SB
authors.lastname: Trinidad
authors.forename: Monica M
authors.initials: MM
authors.lastname: Fujii
authors.forename: Gail P
authors.initials: GP
authors.lastname: Jarvik
authors.forename: Eric B
authors.initials: EB
authors.lastname: Larson
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D003258:Consumer Behavior; D003625:Data Collection; D030541:Databases, Genetic; D005260:Female; D006801:Humans; D033181:Information Dissemination; D007258:Informed Consent; D008297:Male; D035842:Research Subjects; D013689:Telephone; D014861:Washington