同意对危重儿童进行快速基因组测序:法律和伦理问题。

IF 1.6 Q2 ETHICS Monash Bioethics Review Pub Date : 2021-12-01 Epub Date: 2021-12-31 DOI:10.1007/s40592-021-00146-0
Christopher Gyngell, Fiona Lynch, Zornitza Stark, Danya Vears
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引用次数: 5

摘要

尽管快速基因组测序(RGS)正在改善对患有罕见疾病的危重儿童的护理,但它也提出了重要的伦理问题,随着它的使用变得更加广泛,这些问题需要加以探讨。其中两个问题涉及进行RGS所需的同意程度,以及推翻父母不允许对病重的孩子进行RGS的决定是否合适。为了探讨这些问题,我们首先研究了确保基因组测序同意的法律框架,以及它们如何适用于危重儿童RGS的具体背景。然后,我们使用临床伦理学的一个工具,即父母自由裁量权区域,来探索两个案例研究,并确定在何种情况下,父母拒绝RGS可能是合适的。我们认为,RGS可能是这样一种情况:除了评估所提供测试的复杂性外,在决定所需的同意程度时,考虑对患者结果的影响在伦理上是适当的。我们还建议,在某些情况下,即使违背了父母的意愿,实施RGS也可能在道德上是合理的。需要做更多的工作来研究如何制定和实施对危重儿童的RGS的“时间敏感”的例外情况,以确定当前关于基因组测序同意的指导。
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Consent for rapid genomic sequencing for critically ill children: legal and ethical issues.

Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents' decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal frameworks on securing consent for genomic sequencing and how they apply to the specific context of RGS for critically ill children. We then use a tool from clinical ethics, the Zone of Parental Discretion, to explore two case studies and identify under which circumstances it might be appropriate for parental refusal of RGS to be overridden. We argue that RGS may be a context where, in addition to assessing the complexity of the test offered, it is ethically appropriate to consider an effect on patient outcomes when deciding the degree of consent required. We also suggest that there are some contexts where it may be ethically justified to perform RGS, even when it is actively against the wishes of the parents. More work is needed to examine exactly how 'time-sensitive' exceptions to current guidance on consent for genomic sequencing could be formulated and operationalised for RGS for critically ill-children.

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来源期刊
CiteScore
2.70
自引率
6.20%
发文量
16
期刊介绍: Monash Bioethics Review provides comprehensive coverage of traditional topics and emerging issues in bioethics. The Journal is especially concerned with empirically-informed philosophical bioethical analysis with policy relevance. Monash Bioethics Review also regularly publishes empirical studies providing explicit ethical analysis and/or with significant ethical or policy implications. Produced by the Monash University Centre for Human Bioethics since 1981 (originally as Bioethics News), Monash Bioethics Review is the oldest peer reviewed bioethics journal based in Australia–and one of the oldest bioethics journals in the world. An international forum for empirically-informed philosophical bioethical analysis with policy relevance. Includes empirical studies providing explicit ethical analysis and/or with significant ethical or policy implications. One of the oldest bioethics journals, produced by a world-leading bioethics centre. Publishes papers up to 13,000 words in length. Unique New Feature: All Articles Open for Commentary
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