罕见病患者权利保障的伦理责任

罕见病患者的道德、法律、经济与文化权利都无法得到应有保障。这与传统道德以亲疏远近来决定责任的承担顺序有关。在这种道德模式下，各个责任主体对罕见病患者的有效支持不足。罗伯特·E·古丁的弱势原理提供了一个全新审视伦理责任的维度，指出责任源于弱势，责任效力与责任对象依赖责任主体的程度密切相关。从不同维度看，罕见病患者都属于弱势群体，因而可运用此原理，将其权利保障的责任分配于不同责任主体，并以责任效力的高低顺序，重构以政府、医护方、企业、社会组织、媒体与大众、家庭对罕见病患者的伦理责任体系。

On Ethical Responsibility of Rights Protection of Patients with Rare Diseases

The moral, legal, economic and cultural rights of patients with rare diseases are not properly guaranteed at present. This is due to the order of responsibility determined by intimacy in traditional morality. Under this moral model, effective supports from responsible subjects to patients with rare diseases are obviously insufficient. In this sense, Robert E. Goodin's weak principle provides a new dimension to examine ethical responsibility, indicating that responsibility originates from weakness, and the effectiveness of responsibility is closely related to how much the responsibility object depends on the responsibility subject. With this principle, the responsibility of rights protection of patients with rare diseases can be assigned to different subjects, and the ethical responsibility system for such patients can be reconstructed composed of government, health care providers, enterprises, social organizations, media and the public, and families in the order of responsibility effectiveness.