Highly Accessed Correspondence

Towards a data sharing Code of Conduct for international genomic research

Bartha Maria Knoppers1*, Jennifer R Harris2, Anne Marie Tassé1, Isabelle Budin-Ljøsne2, Jane Kaye3, Mylène Deschênes4 and Ma'n H Zawati1

Author Affiliations

1 Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada

2 Norwegian Institute of Public Health, PO Box 4404, Nydalen, N-0403 Oslo, Norway

3 Department of Public Health, University of Oxford, Richards Building, Old Road Campus, Headington, Oxford OX3 7LF, UK

4 P3G, Suite 590, 3333 Queen-Mary Road, Montreal, Quebec H3V 1A2, Canada

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Genome Medicine 2011, 3:46  doi:10.1186/gm262

Published: 14 July 2011

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.