罕见病防治相关伦理问题探究

Research on Ethical Issues Related to the Prevention and Control of Rare Diseases

在全球范围内,越来越多的国家和地区将罕见病问题纳入国家公共卫生治理的范畴。由于罕见病的特殊性,罕见病防治过程中的相关医疗卫生政策、相关药物、疾病诊治的伦理问题及其他相关社会问题需要给予更多关注,同时提出罕见病防治中的伦理原则,包括生命至上原则、公正原则、尊重原则、互助原则。在罕见病防治过程中,针对公共健康行政组织、公共健康服务组织、与公共健康相关的民间组织三个主要的责任主体,提出其需要承担的具体伦理责任。

Globally,more and more countries and regions have incorporated rare diseases into national public health governance.Due to the particularity of rare diseases,more attention needs to be devoted into its relevant policies,relevant drugs,and to the ethical and social problems raised in its treatment.Meanwhile,certain ethical principles are put forward,namely the principle of life first,the principle of justice,respect and mutual assistance.In the course of prevention and treatment of rare diseases,it is pointed out that public health administrative organization,public health service organization and civil organization related to public health should take the relevant ethical responsibility.