Towards a data sharing Code of Conduct for international genomic research
2011; BioMed Central; Volume: 3; Issue: 7 Linguagem: Inglês
10.1186/gm262
ISSN1756-994X
AutoresBartha Maria Knoppers, Jennifer R. Harris, Anne Marie Tassé, Isabelle Budin‐Ljøsne, Jane Kaye, Mylène Deschênes, Ma’n H. Zawati,
Tópico(s)Cancer Genomics and Diagnostics
ResumoData 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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