Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".
Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".
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DOI：
10.1111/jlme.12298
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发表时间：
2015
期刊：
影响因子：
--
通讯作者：
Green RC
中科院分区：
文献类型：
--
作者：
Wilfond BS;Fernandez CV;Green RC
儿科临床测序中成人发病疾病的次要发现可以使父母或其他家庭成员受益。在没有数据显示伤害的情况下，父母要求提供这种信息在道德上是合理的，因为在其他类型的医疗决策中，他们通常被赋予自由裁量权，除非他们的决定明显伤害儿童。有些父母可能不想要这些信息，因为这可能会分散他们对孩子潜在疾病的关注，而这些疾病促使他们进行测序。收集家庭影响数据可能会改善未来的政策决定。
Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information because in other types of medical decision-making they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child’s underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations.