基于分配正义理论的罕见病权益保障机制研究

Study on the Protection Mechanism of Rights and Interests of Rare Diseases based on the Theory Distributive Justice

罕见病权益保障,长期缺乏适配且充分的理论解释。对此,基于罗尔斯分配正义原则,确立罕见病权益的分配正义框架,并针对目前罕见病权益保障存在的机会分配不均、个体价值不强、实施效果不佳等制约因素,从建立罕见病统筹协调机制、形成罕见病政策支持体系、保障罕见病服务公平可及等维度,探索建构基于分配正义的罕见病权益保障机制。

There is a long-term lack of appropriate and sufficient theoretical explanation for the protection of rights and interests of rare diseases.Based on the Rawls'principle of distributive justice,the article establishes a framework of distributive justice for the rights and interests of rare diseases,focuses on the constraints of unequal distribution of opportunities,weak individual value,and ineffective implementation of protecting the rights and interests of rare diseases,and explores the construction of a protection mechanism of the rights and interests of rare diseases based on distributive justice from the perspective of setting up a coordinated mechanism for rare diseases,forming a system of policy support for rare diseases,and ensuring the fairness and accessibility of the services for rare diseases.