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At the Eagle Genomics Symposium Fiona Nielsen CEO and founder of DNAdigest presented a discussion of the trade-off between privacy and open access and how hard-to-access data is hindering progress in genetics research. Read more at http://DNAdigest.org and have a look at our campaign in support of collaborative open science for human genetics: http://tiny.cc/funddna
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Secure the data – share the knowledge
Fiona Nielsen, DNAdigest founder and CEOEagle Genomics Symposium 2014.org
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CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA
CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA
CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA
Why is no more data available to provide evidence-based results?
Data Privacy vs Data Access
Restricted access repositories
Open access
• Time-consuming deposit
• Time-consuming access
• Difficult to discover data
• Requires consent for open access (PGP) or
• Details removed (1k genomes)
deadlock
• Data discovery• Data access• Incentives
You are invited!
• Connectivity• Aggregation• Immediate access
DEMO
Secure the data – share the knowledge
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