Rapid Challenges: Ethics and Genomic Neonatal Intensive Care
Rapid Challenges: Ethics and Genomic Neonatal Intensive Care
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DOI：
10.1542/peds.2018-1099d
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发表时间：
2019-01-01
期刊：
影响因子：
8
通讯作者：
Savulescu, Julian
中科院分区：
文献类型：
--
作者：
Gyngell, Christopher;Newson, Ainsley J.;Savulescu, Julian
新生儿重症监护室是基因组医学的优先实施领域。 NICU 中的快速基因组检测预计将成为基因组医学的关键应用，其带来的明显好处将推动基因组学的更广泛应用。全球多个中心的研究现已证明快速基因组测序在这种情况下的临床实用性和成本效益，为广泛实施铺平了道路。然而，引入这种潜在的强大工具来预测新生儿重症监护室未来的损伤也提出了深刻的伦理挑战。开发包含道德问题的识别、探索和分析的良好实践模型对于成功实施至关重要。在本文中，我们分析了 3 个这样的问题：（1）在充满压力、情绪激动的环境中获得复杂测试同意的价值和意义； (2) 快速诊断对亲子关系的影响及其对医疗和家庭决定的影响，特别是与治疗限制有关的影响； (3) 分配正义（即，在 NICU 中提供快速基因组检测所需的大量成本和资源转移是否合理）。
NICUs are a priority implementation area for genomic medicine. Rapid genomic testing in the NICU is expected to be genomic medicine's critical application, providing such clear benefits that it drives the adoption of genomics more broadly. Studies from multiple centers worldwide have now demonstrated the clinical utility and cost-effectiveness of rapid genomic sequencing in this setting, paving the way for widespread implementation. However, the introduction of this potentially powerful tool for predicting future impairment in the NICU also raises profound ethical challenges. Developing models of good practice that incorporate the identification, exploration, and analysis of ethical issues will be critical for successful implementation. In this article, we analyze 3 such issues: (1) the value and meaning of gaining consent to a complex test in a stressful, emotionally charged environment; (2) the effect of rapid diagnosis on parent-child bonding and its implications for medical and family decisions, particularly in relation to treatment limitation; and (3) distributive justice (ie, whether the substantial cost and diversion of resources to deliver rapid genomic testing in the NICU can be justified).