市场经济条件下罕见病医药卫生政策的伦理选择

The Ethical Choice of Drug and Health Policy for Rare Diseases under the Condition of Market Economy

在市场经济条件下,罕见病低的发病率与低的商业开发价值使得罕见病患者经常面临缺医少药的困境。在有限卫生资源下,卫生政策制定者如何认识罕见病患者的个体生命健康、医药事业道德责任和社会整体利益的最大化之间的关系,成为我国罕见病患者能否获得倾斜性资源分配的关键问题。笔者从功利主义与平等主义制度伦理思想与生命伦理原则,解析医药卫生政策应向罕见病倾斜的伦理选择之国际经验与理由。

Under the condition of the free market economy,the low incidence of rare diseases and low commercial exploitable value make patients with rare diseases frequently faced with the plight of drug shortage.Policy maker＇ s understanding of the relationships among individual health of the patients,ethics and responsibility of drug enterprises,and social profit maximization becomes the key of the availability to the patients in the inclined resource allocation.Clarifying analyses are given of the international experience and reason of ethical choice of drug and health policy inclined to rare diseases from the aspect of ethical thoughts and bioethics principles under the utilitarianism and egalitarian system.