中国罕见病防治的伦理思考

Ethical Thinking on the Prevention and Treatment of Rare Diseases in China

我国目前罕见病防治存在的问题有:重视不够,相关法律、法规、制度不健全,医疗机构诊疗技术落后、医学院校罕见病内容课程少等;提出调整医疗资源的分配、制定相关法规法律、建立罕见病的全面管理机制、普及罕见病的宣传教育、建立罕见病患者医疗保障机制等措施。

Problems exist in current prevention and treatment of rare diseases in China as following： insufficiency of emphasis ; imperfect in relative laws, regulations and policies ; some medical institutions lag behind in diagnosis and treatment; courses about rare diseases are less in medical colleges and so forth. Some measures were proposed such as adjusting the allocation of medical resources; establishing relative laws and regulations; establishing the comprehensive management mechanism for rare diseases; popularizing the education on rare diseases; setting up the mechanism of medical security for rare diseases patients and so forth.