Ethical Enlightenment of Foreign Rare Disease Treatment Guarantee System to China / 中国医学伦理学

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.