Glad you asked: participants' opinions of re-consent for dbGap data submission.
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.
Ludman
Evette J
EJ
Group Health Research Institute, USA. ludman.e@ghc.org
Fullerton
Stephanie M
SM
Spangler
Leslie
L
Trinidad
Susan Brown
SB
Fujii
Monica M
MM
Jarvik
Gail P
GP
Larson
Eric B
EB
Burke
Wylie
W
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