Regulating Cross-Border Genomic Data Sharing in China: Concurrence of Statist Control and Individual Protection
Human Genetics, 2018, Volume 137, Issue 8, 605-615
24 Pages Posted: 31 Jul 2018 Last revised: 4 Oct 2018
Date Written: June 1, 2018
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.
Keywords: genomic data sharing, data protection, health information, right to privacy, human genetic materials, Chinese law, ethics committees
JEL Classification: K23, K32, I18
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