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

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 approach...

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Detalles Bibliográficos
Autores principales: Chen, Yongxi, Song, Lingqiao
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132628/
https://www.ncbi.nlm.nih.gov/pubmed/30014187
http://dx.doi.org/10.1007/s00439-018-1903-2
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author Chen, Yongxi
Song, Lingqiao
author_facet Chen, Yongxi
Song, Lingqiao
author_sort Chen, Yongxi
collection PubMed
description 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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spelling pubmed-61326282018-09-13 China: concurring regulation of cross-border genomic data sharing for statist control and individual protection Chen, Yongxi Song, Lingqiao Hum Genet Review 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. Springer Berlin Heidelberg 2018-07-16 2018 /pmc/articles/PMC6132628/ /pubmed/30014187 http://dx.doi.org/10.1007/s00439-018-1903-2 Text en © The Author(s) 2018, corrected publication August 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Review
Chen, Yongxi
Song, Lingqiao
China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title_full China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title_fullStr China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title_full_unstemmed China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title_short China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
title_sort china: concurring regulation of cross-border genomic data sharing for statist control and individual protection
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132628/
https://www.ncbi.nlm.nih.gov/pubmed/30014187
http://dx.doi.org/10.1007/s00439-018-1903-2
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