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Biopreserv Biobank. 2016 Jun;14(3):256-9. doi: 10.1089/bio.2016.0005. Epub 2016 Apr 15.

An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.

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1
Centre of Genomics and Policy , Montreal, Canada .

Abstract

The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. Worldwide representation of institutions, funders, researchers, and patient advocacy groups at the Global Alliance is testament to a shared ideal that sees maximizing the public good as a chief priority of genomic innovation in health. The Global Alliance has made a critical stride in this regard with the development of its Framework for Responsible Sharing of Genomic and Health-related Data.(1) This article first discusses the human rights pillars that underlie the Framework and mission of the Global Alliance. Second, it outlines the Global Alliance's use of data governance policies through a number of demonstration projects. Finally, the authors describe how the Global Alliance envisions international data sharing moving forward in the postgenomic era.

PMID:
27082668
DOI:
10.1089/bio.2016.0005
[Indexed for MEDLINE]

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