Efficiency and fairness： the government’s “vulnerable responsibility” in safeguarding rare disease patients
10.12026/j.issn.1001-8565.2025.05.04
- VernacularTitle:效益与公平：政府保障罕见病患者的“弱势责任”
- Author:
Jieyu YANG
1
Author Information
1. School of Civil Affairs and Social Work， Changsha Social Work College， Changsha 410004， China
- Publication Type:Journal Article
- Keywords:
rare disease patient;
government responsibility;
vulnerable responsibility;
medical ethics
- From:
Chinese Medical Ethics
2025;38(5):565-573
- CountryChina
- Language:Chinese
-
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.
