Glad you asked: participants' opinions of re-consent for dbGap data submission.
J Empir Res Hum Res Ethics
; 5(3): 9-16, 2010 Sep.
Article
in En
| MEDLINE
| ID: mdl-20831417
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.
Full text:
1
Database:
MEDLINE
Main subject:
Attitude
/
Databases, Genetic
/
Information Dissemination
/
Research Subjects
/
Informed Consent
Limits:
Aged
/
Aged80
/
Female
/
Humans
/
Male
Country/Region as subject:
America do norte
Language:
En
Journal:
J Empir Res Hum Res Ethics
Journal subject:
ETICA
Year:
2010
Type:
Article
Affiliation country:
United States