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The need to redefine genomic data sharing: A focus on data accessibility

The need to redefine genomic data sharing: A focus on data accessibility

• Tempest A. van Schaik, 
• Nadezda V. Kovalevskaya, 
• Elena Protopapas, 
• Hamza Wahid, 
• Fiona G.G. Nielsen^, 

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DOI: 10.1016/j.atg.2014.09.013

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Abstract

DNAdigest's mission is to investigate and address the issues hindering efficient and ethical genomic data sharing in the human genomics research community. We conducted contextual interviews with human genomics researchers in clinical, academic or industrial R&D settings about their experience with accessing and sharing human genomic data. The qualitative interviews were followed by an online survey which provided quantitative support for our findings. Here we present the generalised workflow for accessing human genomic data through both public and restricted-access repositories and discuss reported points of frustration and their possible improvements. We discuss how data discoverability and accessibility are lacking in current mechanisms and how these are the prerequisites for adoption of best practices in the research community. We summarise current initiatives related to genomic data discovery and present a new data discovery platform available at http://nucleobase.co.uk.

Keywords

• Genomics; 
• Data sharing; 
• Collaborations; 
• Data privacy; 
• Data access