二元规范体系下我国人体基因数据共享的困境与出路  

The Predicament and Path Forward for Human Genetic Data Sharing in China Under the Dual Normative System

作　　者：董妍 Dong Yan

机构地区：[1]天津大学法学院

出　　处：《兰州学刊》2024年第5期89-103,共15页

基　　金：国家社会科学基金项目“政府信息(数据)再利用视角下政府数据授权运营实施机制的行政法研究”(项目编号:23BFX016)。

摘　　要：由于我国科研和非科研领域数据保护和共享制度发展不同步,因而在我国人体基因数据共享领域存在二元规范体系,造成了规则适用困难,人体基因数据分散存储、共享难度大,同时加大共享中的数据风险。在数据出口端对数据链进行延长并整合,建立人体基因数据授权运营制度,可从用户端实现数据统一,为建立统一的数据平台提供表一的经济支持和动力,同时可以兼顾安全和效率。此外,人体基因数据授权运营制度也是进一步落实惠益分享原则的重要途径。具体来说,应当建立首席数据官制度实现基于科研领域的数据统合,同时制定合理、公平、透明的收益分配机制,特别要关注人体基因数据产生者的权益,同时应当建立有效的监督和救济机制。Due to the asynchronous development of data protection and sharing systems in both scientific and non-scientific fields in China,there exists a dual normative system in the field of human genetic data sharing.This situation leads to difficulties in rule application,dispersion of human genetic data storage,and challenges in data sharing,consequently increasing the risks associated with sharing.By extending and integrating the data chain at the data export end and establishing an authorization operation system for human genetic data,uniform data management can be achieved from the user end,providing economic support and motivation for the establishment of a unified data platform.This approach can simultaneously address security and efficiency concerns.Furthermore,the authorization operation system for human genetic data is also an important means to further implement the principle of benefit sharing.Specifically,the establishment of a Chief Data Officer system to achieve data integration based on the scientific research field is proposed,along with the development of a reasonable,fair,and transparent profit distribution mechanism,with particular attention to the rights of human genetic data producers.Additionally,effective supervision and relief mechanisms should be established.

关 键 词：人类遗传资源 人体基因数据 数据授权运营 数字经济 

分 类 号：D923[政治法律—民商法学]