孤儿药临床应用的伦理问题及应对措施OA
Ethical issues and coping countermeasures in the clinical application of orphan drugs
中国孤儿药的相关法律和政策体系不断完善,但其在临床应用仍存在诸多困境及经济与伦理的冲突,从功利主义与平等主义、医疗保障系统的可持续性与营救原则、经济利益与生命至上原则、生命权保障与法律冲突等方面,对孤儿药临床应用的伦理学问题进行探讨,从政府宏观调控、医疗机构及医药企业主要执行、社会多方支持、患者自我保障及自我管理等各方面提出切实可行的应对措施.
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.
马譞;杨晓瑜;朱青青;刘小红
西安交通大学第一附属医院儿科,陕西 西安 710061西安交通大学第一附属医院儿科,陕西 西安 710061西安交通大学第一附属医院儿科,陕西 西安 710061西安交通大学第一附属医院儿科,陕西 西安 710061
医药卫生
孤儿药临床应用医学伦理生命至上生命权
orphan drugclinical applicationmedical ethicslife primacyright to life
《中国医学伦理学》 2026 (4)
431-436,6
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