突发公共卫生事件与慢性疾病数据共享的法律与伦理思考

Thinks for the Law and Ethics of Sharing Data on Public Health Emergencies and Chronic Diseases

随着健康医学数据共享的实践和发展,不同疾病类型的数据共享优势也呈现出各自的特点,法律依据和产生的伦理问题也有较大差异。选择2019新型冠状病毒肺炎(COVID-19)和恶性肿瘤分别作为突发公共卫生事件和重大慢性疾病的代表,通过对两类疾病数据共享的相关法律法规、政策及文献等资料进行调研和比较,考虑了新冠肺炎疫情数据共享的实时数据、相关报道,对二者共享遵循的法律依据、共享潜在伦理价值和伦理挑战问题进行了分析和比较。提出了一些潜在解决方案,以期为细化的负责任的医学数据共享的伦理治理提供思路。

With the practice and development of data sharing in healthcare,the difference of sharing advantages has shown according with the characteristics of diseases;besides,the governing laws and ethical issues are quite different.Here the authors choose the ongoing COVID-19 outbreak and cancer as representative of public health emergencies and major chronic disease,respectively.The relevant laws and regulations,policies,and articles on the data sharing were investigated.The real-time data publication and related reports of the ongoing COVID-19was also considered.The legal basis,potential ethical values and challenges of data sharing were analyzed and compared between public health emergencies and oncology research;then,some potential solutions were recommended.The authors wish to produce some ideas for refined ethical governance of responsible data sharing in healthcare.