Ethical Enlightenment of Foreign Rare Disease Treatment Guarantee System to China
10.12026/j.issn.1001-8565.2022.10.07
- VernacularTitle:国外罕见病治疗保障体系对我国的伦理启示
- Author:
Zezhao WANG
1
;
Xiaolin SONG
1
;
Jinzi ZHANG
1
;
Mei YIN
1
;
Ping WANG
1
Author Information
1. School of Humanities and Social Sciences, Harbin Medical University, Harbin 150081, China
- Publication Type:Journal Article
- Keywords:
Rare Diseases;
Policy Guarantee;
Orphan Drugs;
Ethical Quality;
Ethical Supervision
- From:
Chinese Medical Ethics
2022;35(10):1088-1093
- CountryChina
- Language:Chinese
-
Abstract:
By summarizing the policies and regulations of foreign countries on rare disease research and drug research and development, referring to the relevant policy support of treatment guarantee system in the development of rare diseases abroad, and combining with China’s national conditions, this paper analyzed the feasible points that China can learn from, and then put forward some suggestions on the ethical problems existing in the current rare disease research, so as to provide reference suggestions for the relevant policy formulation of rare disease treatment guarantee in China: adjusting regional differences based on the principle of fairness, and establishing a national rare disease information collection center; improving the ethical quality of scientific research in pharmaceutical companies, and strengthening ethical supervision; and the government and society fulfill their obligations to protect the rights and interests of patients with rare diseases.
