Thursday, 14 July 2011
Towards a data-sharing code of conduct for international genomic research
Data-sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Aware of this reality and cognizant of the ever-increasing amount of data access requests currently filed around the world, 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) have decided to develop data-sharing principles specific to the context of collaborative international genomics research. This text proposes seven different principles and a preliminary International Data-Sharing Code of Conduct for ongoing discussion.
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