Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research
Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research
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DOI：
10.1542/peds.2012-0084
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发表时间：
2013-03-01
期刊：
影响因子：
8
通讯作者：
Hull, Sara Chandros
中科院分区：
文献类型：
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作者：
Abdul-Karim, Ruqayyah;Berkman, Benjamin E.;Hull, Sara Chandros
下一代测序技术可能会越来越频繁地用于儿科研究。其结果之一将是，越来越多地确定与研究目标相关的个别基因组研究结果。尽管研究人员和伦理学家对基因研究中的偶然发现提出了理论上的担忧，但下一代测序将使这种曾经很大程度上是假设性的担忧成为越来越多的现实。大多数评论者已开始接受这样的概念，即有某种义务向研究对象披露个人遗传研究结果;然而，这一义务的范围仍不清楚。这些问题在儿科环境中尤其复杂，其中受试者目前不能但通常最终能够在成年时做出自己的医疗决定。本文讨论了在儿科基因组研究中偶然发现的管理。我们提供了一个概述，目前的文献，并提出了一个框架来管理偶然的发现，在这个独特的背景下，我们认为是一个有限的责任披露的基础上。我们希望这将是一个有用的指导研究人员，机构审查委员会和生物伦理学家，预计在基因组技术的进步所提出的复杂的伦理问题的来源。儿科2013;131：564-571
Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology. Pediatrics 2013;131:564-571