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Glad you asked: participants' opinions of re-consent for dbGap data submission.
Ludman, Evette J; Fullerton, Stephanie M; Spangler, Leslie; Trinidad, Susan Brown; Fujii, Monica M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie.
Affiliation
  • Ludman EJ; Group Health Research Institute, USA. ludman.e@ghc.org
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.
Subject(s)

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

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