中国医学伦理学2026，Vol.39Issue(4)：431-436,6.DOI:10.12026/j.issn.1001-8565.2026.04.03
孤儿药临床应用的伦理问题及应对措施
Ethical issues and coping countermeasures in the clinical application of orphan drugs
马譞 1杨晓瑜 1朱青青 1刘小红1
作者信息
- 1. 西安交通大学第一附属医院儿科,陕西 西安 710061
- 折叠
摘要
Abstract
The relevant legal and policy system pertaining to orphan drugs in China has been continuously refined,yet numerous predicaments as well as conflicts between economy and ethics still exist in their clinical application.This paper explored the ethical issues in the clinical application of orphan drugs from multiple perspectives,such as utilitarianism and egalitarianism,the sustainability of medical insurance systems and the rescue principle,economic interests and the principle of life primacy,as well as the right to life and the law.Furthermore,it proposed practical and feasible countermeasures from various dimensions,including macro-control by the government,primary implementation by medical institutions and pharmaceutical enterprises,multi-party social support,and patients'self-protection and self-management.关键词
孤儿药/临床应用/医学伦理/生命至上/生命权Key words
orphan drug/clinical application/medical ethics/life primacy/right to life分类
医药卫生引用本文复制引用
马譞,杨晓瑜,朱青青,刘小红..孤儿药临床应用的伦理问题及应对措施[J].中国医学伦理学,2026,39(4):431-436,6.
