Current Status and Ethical Considerations of Data Collection and Application in Rare Disease Research / 中国医学伦理学

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.

Investigation core emergency response competences of medical staff in public health outbreak of corona virus disease 2019 / 重庆医学

Objective To investigate the core emergency response capabilities of medical workers for corona virus disease 2019 (COVID-19) public health emergency, in order to provide references for improving emergency level. Methods By means of convenient sampling, the general information questionnaire and the medical staff's 2019-new coronavirus (2019-nCoV) core emergency capability questionnaire were used to conduct this survey, and the status of 2019-nCoV core emergency capability of 629 clinical medical staff was analysed. Results The score of core emergency response capability of medical staff for 2019-nCoV was (135.60±21.73)points, with a score rate of 73.3%; the score of preventive capability dimension was (11.69±1.96)points, with a score rate of 77.93%; the score of preparation ability dimension was (20.79±4.18)points, and the score rate was 69.30%; the score of rescue ability was (103.11±16.93)points, with a scoring rate of 73.57%. Conclusion The core emergency response capability of medical worker for 2019-nCoV and its dimensions are at a medium level. At the present stage, the training of core knowledge of medical personnel 2019-nCoV should be strengthened, effective measures should be taken to improve the alleviation of weakness in rescue, and the self-psychological adjustment of medical personnel should be strengthened to improve the core emergency response capability of medical worker.