健康医疗大数据面临的伦理挑战与应对思考  

Ethical challenges and responses of big data in healthcare

作　　者：袁杨 关健[1] Yuan Yang;Guan Jian(Chinese Academy of Medical Sciences&Peking Union Medical College/Peking Union Medical College Hospital/Clinical Center of National Scientific Data Sharing Platform for Papulation and Health&Special Data Service for Translational Oncology,Beijing 100730,China)

机构地区：[1]北京协和医学院&中国医学科学院北京协和医院,国家人口与健康科学数据共享服务平台临床医学科学数据中心(协和),100730

出　　处：《中华医学科研管理杂志》2019年第6期405-408,共4页Chinese Journal of Medical Science Research Management

摘　　要：目的分析健康医疗大数据面临的伦理挑战,以期为其应用和发展提出潜在解决建议。方法通过重要文献调研及典型案例分析,以及分析健康医疗大数据现状的发展趋势等讨论伦理难题。结果技术进步和政策利好为医学大数据的发展带来了新的机遇,但也不可避免的面临一些伦理挑战,例如传统知情同意程序履行困难,电子储存和传送增加病历信息和隐私泄露风险,隐私保护受到挑战等。解决这些问题,需要完善或建立相关法规和指南,调整包括知情同意的管理体系,并建立相应的技术支撑平台和培养跨学科的复合型人才队伍。结论健康医疗大数据的建立和应用是一个系统工程,其引起的伦理挑战需要法律法规、管理和技术等综合保障体系来解决。Objective To analyze ethical challenges raised from big data in healthcare,provide suggestions for improving its application and development.Methods The ethical challenges were discussed according to the study of important literatures,typical case analysis,analyzing the current situation and its development trend of big data in healthcare.Results The advancement of technology and policies favorable have provided new opportunities for development of big data in healthcare.However,there are still some ethical challenges for its application.For instance,the difficulty of perform traditional informed consent process,the high risk of EHR information release during data storage and transmission,and inadequate privacy protection.To solve these problems,the corresponding regulation and some guidelines should be refined and/or updated;the management system that include informed consent should be adjusted;the corresponding technical supporting platform and specialized interdisciplinary team are also needed.Conclusions The establishment and application is a systematic project.The solution of the ethical challenges is also based on a comprehensive safeguard system of laws,regulations,management and technology.

关 键 词：健康医疗大数据 伦理挑战 隐私 知情同意 

分 类 号：R-052[医药卫生]