Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
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DOI：
10.1111/jlme.12288
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发表时间：
2015
期刊：
影响因子：
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通讯作者：
Wilfond BS
中科院分区：
文献类型：
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作者：
Wolf SM;Branum R;Koenig BA;Petersen GM;Berry SA;Beskow LM;Daly MB;Fernandez CV;Green RC;LeRoy BS;Lindor NM;O'Rourke PP;Breitkopf CR;Rothstein MA;Van Ness B;Wilfond BS
基因组研究结果和对研究参与者健康有影响的偶然发现不仅对参与者有潜在的兴趣，而且对参与者的家人也有潜在的兴趣。然而，调查人员在将结果返还给亲属方面缺乏指导，包括在参与者死亡后。在这篇论文中，一个国家工作组提供了共识分析和建议，包括一个道德框架，以指导调查人员在参与者死亡之前和之后处理这一具有挑战性的问题。
Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.