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Parental Perspectives on a Pediatric Human Non-Subjects Biobank

机译：儿科人类非受试者生物库的父母观点

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Background: Genomic biorepositories will be important tools to help unravel the effect of common genetic variants on risk for common pediatric diseasesOur objective was to explore how parents would respond to the inclusion of children in an opt-out model biobankMethods: We conducted semistructured interviews with parents in hospital-based pediatric clinicsParticipants responded to a description of a biorepository already collecting samples from adultsTwo coders independently analyzed and coded interviews using framework analysisOpt-out forms were later piloted in a clinic areaParental opt-out choices were recorded electronically, with opt-out rates reported hereResults: Parents strongly supported medical research in general and expressed a high level of trust that Vanderbilt University would keep their child's medical information privateParents were more likely to allow their child's sample to be included in the biorepository than to allow their child to participate in a hypothetical study that would not help or harm their child but might help other childrenOnly a minority were able to volunteer a concern raised by the description of the biobankThe opt-out rate was initially high compared with the opt-out rate in the adult biorepository, but decreased after the first week to near the baseline in adult clinicsConclusions: Parents in our study generally support an opt-out model biobank in childrenMost would allow their own child's sample to be includedInstitutions seeking to build pediatric biobanks may consider the human non-subjects model as a viable alternative to traditional human-subjects biobanks.
机译：背景：基因组生物资源库将是帮助揭示常见遗传变异对常见儿科疾病风险影响的重要工具我们的目标是探索父母如何应对选择退出模型生物库中的儿童纳入方法方法：我们与父母进行了半结构化访谈在医院的儿科门诊中，参与者对已经从成年人那里收集了样本的生物库的描述做出了回应。两位编码员使用框架分析进行了独立分析和访谈，随后在诊所区域试用了退出表以电子方式记录了父母的退出选择，并记录了退出率结果：父母总体上大力支持医学研究，并表示高度信任范德比尔特大学将其孩子的医疗信息保密。与父母相比，父母更可能允许其孩子的样本被包括在生物存储库中假设的不会帮助或伤害他们的孩子但可能会帮助其他孩子的书房只有少数人能够自愿提出对生物库描述的关注。选择退出率最初与成人生物存储库中的选择退出率相比较高，但下降了结论：我们研究中的父母通常支持儿童选择退出模式生物库。大多数将允许他们自己孩子的样本包括在内。寻求建立儿科生物库的机构可能会将人类非受试者模型视为一种替代传统人类生物库的可行选择。

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