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

Yongxi Chen*, Lingqiao Song

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

16 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)605-615
Number of pages11
JournalHuman Genetics
Volume137
Issue number8
Early online date16 Jul 2018
DOIs
Publication statusPublished - Aug 2018
Externally publishedYes

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