罗尔斯正义论视角下的罕见病卫生政策问题

罕见病问题已成为当今世界性的难题。随着生物科学技术的发展,少数罕见病已有了有效治疗方法。世界各国相继出台了有关罕见病及其用药的政策、法规,用以保障罕见病患者的权益。我国目前还没有制定有关罕见病的公共政策,罕见病尚未能得到医学界和社会的充分重视。有鉴于此,通过从罗尔斯的《正义论》视角探讨有关罕见病公共政策中的伦理问题,以促进罕见病公共政策的制定,从立法上保障罕见病患者人群的权益,实现社会正义。

Health Policy Issues of Rare Diseases from Rolls's Just Theory

Issue of rare diseases has become a worldwide problem.As the development of bioscience and technologies,some rare diseases have been effectively treated.A number of nations have successively released policies and legislations on rare diseases in order to protect the sufferers' interests.However,none public health policy has been made in China,due to the lack of attention from the general public and medical circle.Considering all the above factors,this paper explores the health policy issues of rare diseases...