澳大利亚脊髓性肌萎缩症管理现状变化所涉及的伦理问题。
Ethical aspects of the changing landscape for spinal muscular atrophy management in Australia.
机构信息
BSc (Hons), LLB (Hons), PhD, Professor of Bioethics, Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, NSW.
BA (Hons), PhD, MPhil (Med), Research Fellow, Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, NSW.
出版信息
Aust J Gen Pract. 2022 Mar;51(3):131-135. doi: 10.31128/AJGP-06-21-6028.
BACKGROUND
New methods of detecting and treating spinal muscular atrophy (SMA) are now available, and the Australian SMA landscape is rapidly changing. These various interventions can be increasingly complex to navigate for both healthcare professionals and at-risk families.
OBJECTIVE
The aim of this article is to describe how recent developments in SMA testing and treatment give rise to ethical considerations.
DISCUSSION
Ethical issues in SMA detection and treatment arise for both individual interventions and how they integrate. A patient-centred approach can help general practitioners to navigate these issues.
背景
目前已有新的方法可用于检测和治疗脊髓性肌萎缩症（SMA），澳大利亚 SMA 领域正在迅速变化。对于医疗保健专业人员和高危家庭来说，这些不同的干预措施越来越复杂，难以应对。
目的
本文旨在描述 SMA 检测和治疗方面的最新进展如何引发伦理问题。
讨论
SMA 检测和治疗中的伦理问题不仅涉及各个干预措施本身，还涉及它们的整合方式。以患者为中心的方法可以帮助全科医生解决这些问题。
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