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Opinion

Building a data sharing model for global genomic research

Patricia Kosseim1, Edward S Dove2, Carman Baggaley1, Eric M Meslin34, Fred H Cate45, Jane Kaye6, Jennifer R Harris7 and Bartha M Knoppers2*

Author Affiliations

1 Office of the Privacy Commissioner of Canada, Ottawa K1A 1H3, Ontario, Canada

2 Centre of Genomics and Policy, McGill University, Montreal H3A 0G1, Quebec, Canada

3 IU Center for Bioethics, Indiana University, Indianapolis 46202, IN, USA

4 Center for Law, Ethics, and Applied Research in Health Information, Bloomington 47408, IN, USA

5 Maurer School of Law, Indiana University, Bloomington 47405, IN, USA

6 HeLEX-Centre for Health, Law and Emerging Technologies, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK

7 Division of Epidemiology, Department of Genes and Environment, Norwegian Institute of Public Health, Nydalen 0403, Oslo, Norway

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Genome Biology 2014, 15:430  doi:10.1186/s13059-014-0430-2

Published: 11 August 2014

Abstract

Data sharing models designed to facilitate global business provide insights for improving transborder genomic data sharing. We argue that a flexible, externally endorsed, multilateral arrangement, combined with an objective third-party assurance mechanism, can effectively balance privacy with the need to share genomic data globally.