中国医学伦理学2025，Vol.38Issue(5)：565-573,9.DOI:10.12026/j.issn.1001-8565.2025.05.04
效益与公平:政府保障罕见病患者的"弱势责任"
Efficiency and fairness:the government's"vulnerable responsibility"in safeguarding rare disease patients
摘要
Abstract
In the issue of safeguarding the rights of rare disease patients,the government,as the principal responsible entity,bears an important mission.However,traditional ethics are insufficient when confronted with the moral needs of rare disease patients and the government's rescue dilemma.The theory of vulnerability provides us with new ethical thinking,guiding us to explore the concept of"vulnerable responsibility."Starting from ethical dilemmas,this paper explored the government's"vulnerable responsibility"in safeguarding the rights of rare disease patients.This responsibility stems from the vulnerable position of rare disease patients unable to help themselves,the profound impact of government actions on their significant interests,as well as the government's role and capacity.This responsibility includes the negative responsibility of providing a safety net,and the positive responsibility of meeting the diverse needs of rare disease patients.The pathways,boundaries,and principles of the government's"vulnerable responsibility"were deeply analyzed.The rationality of the government's"vulnerable responsibility"was elucidated by comparison with traditional ethics.This study contributes to understanding the government's responsibility in safeguarding the rights of rare disease patients,while providing valuable insights for future policy formulation.关键词
罕见病患者/政府责任/弱势责任/医学伦理Key words
rare disease patient/government responsibility/vulnerable responsibility/medical ethics引用本文复制引用
杨婕娱..效益与公平:政府保障罕见病患者的"弱势责任"[J].中国医学伦理学,2025,38(5):565-573,9.基金项目
2022年教育部人文社会科学研究规划基金项目"弱势理论视角下罕见病群体权利需求变化与社会政策调适研究"(22YJA840015) （22YJA840015）
