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. 2011 Jul 14;3(7):46.
doi: 10.1186/gm262.

Towards a data sharing Code of Conduct for international genomic research

Bartha Maria Knoppers  1 , Jennifer R Harris, Anne Marie Tassé, Isabelle Budin-Ljøsne, Jane Kaye, Mylène Deschênes, Ma'n H Zawati
Affiliations

Towards a data sharing Code of Conduct for international genomic research

Bartha Maria Knoppers et al. Genome Med. .

Abstract

Data sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Because of this and the ever-increasing amount of data access requests currently filed around the world, three groups have decided to develop data sharing principles specific to the context of collaborative international genomics research. These groups are: the international Public Population Project in Genomics (P3G), an international consortium of projects partaking in large-scale genetic epidemiological studies and biobanks; the European Network for Genetic and Genomic Epidemiology (ENGAGE), a research project aiming to translate data from large-scale epidemiological research initiatives into relevant clinical information; and the Centre for Health, Law and Emerging Technologies (HeLEX). We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion.

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