人道功利主义视域下罕见病防治伦理治理路径研究

对罕见病伦理困境的焦点在于人道主义与功利主义之争，只讲人道不讲功利，制度只能沦为形式；只讲功利不讲人道，制度也会沦为企业逐利的工具。由此引入人道功利主义理论，试图调和人道主义与功利主义的矛盾，并从理论与实践层面证明人道功利主义适用于罕见病伦理困境的解决。在此基础上，提出宣传罕见病防治的重要意义，动员社会舆论支持和赞助；加强罕见病精细化管理，分层次、分阶段应对罕见病；目前孤儿药以国外引进为主，同时加大激励本土自主研发；利益相关主体风险分担；倡导多方合作，尤其是全球合作应对罕见病的伦理治理路径。

Research on Ethical Governance Path of Prevention and Treatment of Rare Diseases from the Perspective of Humane Utilitarianism

The focus of the ethical dilemma of rare diseases lies in the dispute between humanitarianism and utilitarianism. The system will fall into formalism with pure humanity but utilitarianism, while it will be easily exploited by capitals with pure utilitarianism but humanity. This paper introduces the theory of humane utilitarianism, aims to reconcile the contradiction between humanitarianism and utilitarianism, and to prove that humane utilitarianism is suitable for solving the ethical dilemma of rare diseases from the theoretical and practical levels. On this basis, this paper strengthens the significance of the prevention and treatment of rare diseases, calls for social support and sponsorship, strengthens the refined management according to hierarchical care. At present, orphan drugs are mainly introduced from abroad, independent research and development are encouraged meanwhile. Risk sharing of stakeholders is promoted. Multi-party cooperation, especially global cooperation to deal with the ethical governance path of rare diseases are advocated.