The Predicament and Path Forward for Human Genetic Data Sharing in China Under the Dual Normative System
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.
human genetic resourceshuman genetic dataauthorization operationdigital economy
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