Glad you asked: participants' opinions of re-consent for dbGap data submission.
Glad you asked: participants' opinions of re-consent for dbGap data submission.
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DOI：
10.1525/jer.2010.5.3.9
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发表时间：
2010-09
期刊：
影响因子：
--
通讯作者：
Burke W
中科院分区：
文献类型：
--
作者：
Ludman EJ;Fullerton SM;Spangler L;Trinidad SB;Fujii MM;Jarvik GP;Larson EB;Burke W
对于研究人员何时需要额外的参与者同意(重新同意)才能将现有数据提交到联邦基因型和表型数据库(DBGaP)，目前还没有达成共识。1340名研究参与者要求重新发送他们的数据到DBGaP，其中1159人(86%)同意。我们邀请了前400名同意完成同意决定的人进行电话调查，了解他们做出同意决定的理由以及他们对重新同意过程的满意度；365名参与者完成了调查。受访者报告说，他们被要求获得许可是非常重要的(69%)或有点重要(21%)。许多受访者认为，替代同意的其他方式，如仅通知或选择退出，是不可接受的(分别为67%和40%)。这些结果表明，在某些情况下，重新同意DBGaP沉积可能是可取的，以预测和尊重参与者的偏好。
No consensus exists about when researchers need additional participant consent (re-consent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Reconsent 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 re-consent 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.
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