首页> 美国卫生研究院文献>Balkan Journal of Medical Genetics : BJMG >We’ve Opened Pandora’s Box Haven’t We? Clinical Geneticists’ Views on Ethical Aspects of Genomic Testing in Neonatal Intensive Care
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We’ve Opened Pandora’s Box Haven’t We? Clinical Geneticists’ Views on Ethical Aspects of Genomic Testing in Neonatal Intensive Care

机译:我们已经打开了潘多拉的盒子不是吗?临床遗传学家对新生儿重症监护基因组检测伦理方面的看法

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摘要

The increasing use of genomic testing in neonatal intensive care units (NICU) gives rise to ethical issues. Yet little is known regarding what health professionals implementing the testing think about its ethical aspects. We therefore explored the views of Australian clinical geneticists towards ethical issues in the use of genomic testing in the Neonatal Intensive care Unit (NICU). Semi-structured interviews with 11 clinical geneticists were conducted, transcribed and analysed thematically. Four themes were identified: 1) Consent: the craft is in the conversation, which encapsulated the challenges in the consent process, and with pre-test counseling; 2) Whose autonomy and who decides? This illustrates the balancing of clinical utility and potentially harms the test, and how stakeholder interests are balanced; 3) The winds of change and ethical disruption, recognizing that while professional expertise is vital to clinical decision-making and oversight of mainstreaming, participants also expressed concern over the size of the genetics workforce and 4). Finding Solutions – the resources and mechanisms to prevent and resolve ethical dilemmas when they arise, such as quality genetic counseling, working as a team and drawing on external ethics and legal expertise. The findings highlight the ethical complexities associated with genomic testing in the NICU. They suggest the need for a workforce that has the necessary support and skills to navigate the ethical terrain, drawing on relevant ethical concepts and guidelines to balance the interests of neonates, their careers and health professionals.
机译:在新生儿重症监护病房 (NICU) 中越来越多地使用基因组检测,这引发了伦理问题。然而,对于实施检测的卫生专业人员对其道德方面的看法,我们知之甚少。因此,我们探讨了澳大利亚临床遗传学家对新生儿重症监护病房 (NICU) 使用基因组检测的伦理问题的看法。对 11 位临床遗传学家进行了半结构化访谈,并按主题进行了转录和分析。确定了四个主题:1) 同意:技巧在于对话,它概括了同意过程中的挑战,以及测试前咨询;2) 谁的自主权,谁来决定?这说明了临床效用和潜在损害测试的平衡,以及如何平衡利益相关者的利益;3) 变革之风和道德破坏,认识到虽然专业知识对于临床决策和主流化的监督至关重要,但参与者也对遗传学劳动力的规模表示担忧,4)。寻找解决方案 – 预防和解决出现的道德困境的资源和机制,例如高质量的遗传咨询、团队合作以及利用外部道德和法律专业知识。研究结果强调了与 NICU 基因组检测相关的伦理复杂性。它们表明,需要一支具有必要支持和技能的员工队伍,以驾驭道德领域,利用相关的道德概念和指导方针来平衡新生儿、他们的职业和卫生专业人员的利益。

著录项

  • 期刊名称 Balkan Journal of Medical Genetics : BJMG
  • 作者

    T Arsov;

  • 作者单位
  • 年(卷),期 2023(25),1
  • 年度 2023
  • 页码 5
  • 总页数 7
  • 原文格式 PDF
  • 正文语种
  • 中图分类 遗传学;
  • 关键词

    机译:全基因组测序;生物伦理学;定性研究;重症监护;新生儿;儿科;遗传学;医学;
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