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Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research.超越监管方法的伦理考量:为医疗保健研究中的伦理准备留出空间。
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Surveillance recommendations for DICER1 pathogenic variant carriers: a report from the SIOPE Host Genome Working Group and CanGene-CanVar Clinical Guideline Working Group.DICER1 致病性变异携带者的监测建议:来自 SIOPE 宿主基因组工作组和 CanGene-CanVar 临床指南工作组的报告。
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Public health competences through the lens of the COVID-19 pandemic: what matters for health workforce preparedness for global health emergencies.从 COVID-19 大流行的角度看公共卫生能力:对卫生人力全球卫生突发事件准备工作而言什么才是重要的。
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基因组医学中的伦理准备:英国国家医疗服务体系临床科学家如何应对伦理问题。

Ethical preparedness in genomic medicine: how NHS clinical scientists navigate ethical issues.

机构信息

Ethox Centre, University of Oxford Nuffield Department of Population Health, Oxford, UK

Wellcome Trust Centre for Human Genetics, Oxford, UK.

出版信息

J Med Ethics. 2024 Jul 23;50(8):517-522. doi: 10.1136/jme-2023-109692.

DOI:10.1136/jme-2023-109692
PMID:38320848
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11287646/
Abstract

Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the clinic.We explore what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking.

摘要

关于临床医生在遗传学/基因组学中遇到的伦理问题已经有很多文献发表,但临床实验室科学家所遇到的问题描述得较少。临床实验室科学家现在经常在工作中遇到伦理问题,但是如何最好地支持他们解决这些问题还没有得到充分的探讨。这种关注的缺乏也反映在临床实验室科学家可用的伦理工具上,如指导和审议伦理论坛,这些工具主要是为了管理临床中出现的问题而开发的。我们探讨了临床科学家正在经历哪些伦理问题,他们认为如何最好地分析和管理这些问题,以及他们的实践是否可以通过更具情境性的伦理审议和实践方法(如伦理准备)得到加强。从英国基因伦理学论坛特别召集的一次会议上临床科学家提交的案例的主题分析中,我们得出了三个主要的伦理主题:(1)基因组医学实践导致的劳动力和责任的重新分配;(2)结果的解释和确定性;(3)提出更好的伦理方法的标准化和一致性(例如,更多的指南和政策)可以解决一些出现的挑战。我们认为,虽然标准化对于促进对良好(包括伦理)实践的共同理解很重要,但补充方法来增强和维持伦理准备对于帮助临床科学家和其他在最近扩大的遗传/基因组医学环境中的人培养高质量的伦理思维将是重要的。