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儿科遗传护理的伦理方面:检测和治疗
Kelly E Ormond1, Alessandro Blasimme2, Effy Vayena2
1Department of Health Sciences and Technology, Health Ethics & Policy Lab, ETH Zurich. Hottingerstrasse 10, Zurich 8092, Switzerland; Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine.
Pediatric clinics of North America
|September 13, 2023
概括
儿科提供者面临遗传疾病的伦理困境,包括对遗传测试的知情同意和像基因疗法这样的新疗法. 这些问题影响患者的自主权,心理健康和家庭身份.
科学领域:
- 儿科卫生保健伦理学 儿科卫生保健伦理学
- 遗传医学 伦理学 遗传医学
背景情况:
- 儿童医疗保健提供者在照顾受遗传疾病影响的儿童和家庭时经常遇到道德挑战.
- 这些挑战包括传统的儿科伦理问题以及基因进步带来的新问题.
研究的目的:
- 概述儿科卫生保健提供者在遗传疾病背景下遇到的各种伦理问题.
- 突出围绕遗传测试,儿童预测测试和新兴遗传疗法的不断变化的伦理考虑.
主要方法:
- 这项研究是一个概念性审查和伦理分析.
- 它综合了与儿科遗传护理相关的现有文献和伦理框架.
主要成果:
- 伦理问题范围从代孕决策和终身护理到基因测试的知情同意复杂性.
- 基因测试引发了关于心理影响,隐私,潜在的歧视以及孩子延迟测试的自主权的担忧.
- 基因疗法和基因编辑等新的治疗方法带来了与个人和家庭身份有关的独特挑战.
结论:
- 儿科提供者必须在由遗传疾病和先进的遗传技术塑造的复杂的伦理环境中进行导航.
- 解决知情同意,患者自主权和遗传信息的心理社会影响至关重要.
- 基因疗法和基因编辑对身份的影响需要在临床实践中仔细考虑.
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