精准医学研究中的大数据与隐私保护体系建设

Big data in precision medical research and the establishment of the privacy protection system

目的精准医学研究离不开对新一代生命组学大数据的获取与分析，而这些个体化大数据中不可避免的会包含大量涉及个人隐私的敏感信息。本文主要探讨如何在保护受试者和患者隐私的前提下，对大数据进行有效的整合与共享。方法汇总并分析国内外有关精准医学大数据与隐私保护的相关政策，并从技术研发、伦理规范和制度建设等方面对精准医学大数据隐私保护体系的搭建进行探讨。结果提出了包括伦理规范及制度建设、大数据隐私保护技术研发、面向受试者和患者的隐私安全教育、充分透明的知情同意及其他相关措施在内的系统搭建精准医学大数据隐私保护体系的建议与对策。结论通过多种举措系统搭建精准医学大数据隐私保护体系的建议将为我国政府早日制定并出台相关政策法规提供参考，该保护体系的建立也将为精准医学研究保驾护航，促进精准医学的健康长远发展。

Objective Precision medical research is highly depended on the collection and analy- sis of big data from the new generation of life science. These data will inevitably contain a lot of sensi- tive information relating to individual privacy. This paper mainly investigates how to effectively in- tegrate and share big data under the premise of protecting the privacy of participants and patients. Methods The international policies on precision medical big data and privacy protection were briefly summarized and analyzed. The establishment of the privacy protection system on big data in precision medical research was also explored, mainly from the aspects of technology research and development, ethical norms and policy construction. Results Several suggestions and strategies were put forward for the development of big data privacy protection system, including construction of ethical norms and policies, development of big data privacy protection technology, privacy protection education of partic- ipants and patients, fully transparent informed consent and some other related strategies. Conclusions These suggested strategies on the establishment of big data privacy protection system will provide references for promoting the establishment of related policies and regulations in our country. And this privacy protection system will certainly protect and promote the long-term healthy development of pre- cision medicine.