Current Status and Ethical Considerations of Data Collection and Application in Rare Disease Research
10.12026/j.issn.1001-8565.2023.10.12
- VernacularTitle:罕见病研究数据采集和应用的现状及伦理学思考
- Author:
Wen ZHANG
1
;
Xiaoting YAN
1
;
Ying XU
1
;
Xinxin ZHANG
1
;
Qian LI
1
;
Huang ZUO
1
Author Information
1. Office of Health Information Management, the First Affiliated Hospital of Xi’an Jiaotong University, Xi’an 710061, China
- Publication Type:Journal Article
- Keywords:
Rare Diseases;
Data Collection;
Ethical Principles;
Ethical Review
- From:
Chinese Medical Ethics
2023;36(10):1132-1137
- CountryChina
- Language:Chinese
-
Abstract:
The research on rare diseases in China started relatively late, with scattered research resources and weak data foundation in epidemiology, diagnosis and treatment, and medication, which hinders its research progress. The rare disease data system is the foundation of rare disease research, and the ethical constraint on rare disease data collection is not only the protection of rare disease population, but also the need for the safety and quality of rare disease data. By analyzing and prospecting the current status of the construction of rare disease data systems, including the data of epidemiology, clinical diagnosis and treatment, drug trials, and follow-up to provide reference for the improvement of rare disease data systems. This paper explored the ethical issues to be followed in the process of rare disease data collection from the perspectives of justice, no harm, respect, sharing, and legalization, so as to improve the standardization of rare disease data collection and the understanding of data ethical review.
