China: concurring regulation of cross-border genomic data sharing for statist control and individual protection.

Yongxi Chen, Lingqiao Song
Author Information
  1. Yongxi Chen: Faculty of Law, The University of Hong Kong, Hong Kong, Hong Kong. yongxi@hku.hk. ORCID
  2. Lingqiao Song: Center of Genomics and Policy, McGill University, Montreal, Canada.

Abstract

This paper reviews the major legal instruments and self-regulations that bear heavily on the cross-border sharing of genomic data in China. It first maps out three overlapping frameworks on genomic data and analyzes their underpinning policy goals. Subsequent sections examine the regulatory approaches with respect to five aspects of responsible use and sharing of genomic data, namely, consent, privacy, security, compatible processing, and oversight. It argues that substantial centralised control exerted by the state is, and would probably remain, the dominant feature of genomic data governance in China, though concerns of individual protection are gaining momentum. Rather than revolving around a simplistic antinomy between privacy preservation and open science, the regulatory landscape is mainly shaped by the tension between government desires for national security, state competitiveness, and public health benefits.

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MeSH Term

China
Computer Security
Genetic Privacy
Genetic Research
Humans
Personally Identifiable Information

Word Cloud

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