摘要
《第一批罕见病目录》发布以来,我国罕见病与孤儿药的相关法律和政策体系不断完善,但孤儿药可及性缺失问题依然不容乐观。我国孤儿药可及性问题主要表现在孤儿药的可获得性和患者的可负担性上,其背后的伦理问题主要体现在经济利益与伦理责任、公正原则、药事法与生命健康权及伦理关怀四个方面。基于以上伦理问题的分析,建议从政府调节和伦理调节入手,采取建立健全相关法律法规、激励政策和完善医疗保障体系,引导“向善”的伦理观,提高相关人员的职业素养,呼吁公众关注弱势群体等具体措施,以改善孤儿药可及性缺失的现状。
Since the publication of the first catalogue of rare diseases,the relevant legal and policy systems of rare diseases and orphan drugs in China have been continuously improved,but the lack of access to orphan drugs is still not optimistic.The accessibility of orphan drugs in China is mainly reflected in the availability of orphan drugs and the affordability of patients.The ethical issues behind it are mainly reflected in four aspects:economic interests and ethical responsibilities,the principle of justice,the dilemma between law and the right to life,and ethical care.Based on the analysis of the above ethical issues,it is suggested to start with government regulation and ethical regulation,establish and improve relevant laws and regulations,incentive policies and medical security system,guide the ethical concept of"being good",improve the professional quality of relevant personnel,and call on the public to pay attention to vulnerable groups,so as to improve the current situation of the lack of access to orphan drugs.
作者
吴佳
王高峰
Wu Jia;Wang Gaofeng(School of Marxism Studies,Anhui Medical University,Hefei 230032,China)
出处
《锦州医科大学学报（社会科学版）》
2020年第2期11-14,18,共5页
Journal of Jinzhou Medical University(Social Science Edition)
基金
2017年度安徽省高校人文社会科学研究重点项目“新医改背景下医师职业压力与医患关系实证研究”(编号:SK2017A0876)的研究成果。
关键词
孤儿药
可及性
伦理
orphan drugs
accessibility
ethics
作者简介
吴佳,女,1984年生,安徽宣城人,科技哲学专业在读硕士研究生;通讯作者:王高峰,男,1983年生,江苏沭阳人,副教授,理学博士。
