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Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data...

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Data sharing in the roadmap of the future of human genetics Why do the majority of genetic conditions still go undiagnosed on the molecular level? What does this have to do with data sharing? And why is data sharing in human genetics not as easy as setting up a dropbox of files to share with your colleagues? In this presentation Fiona will introduce some of the core difficulties related to data sharing in human genetics, including data privacy, consent for use, data security, and why finding a way around these road blocks is essential to unlock the promise of the genomic revolution for diagnostics and research in genetic diseases. DNAdigest works to promote and enable easier and more efficient sharing of genomics data for research. We educate and engage our local and international community about the hurdles and dilemmas for data sharing as faced from the perspective of stakeholders in academia, industry and patient communities. As part of our work we are working with our community and supporters to prototype new mechanisms and concepts for data sharing and data access.
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Secure the data – share the knowledge Fiona Nielsen, DNAdigest founder and CEO Eagle Genomics Symposium 2014 .org
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Page 1: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

Secure the data – share the knowledge

Fiona Nielsen, DNAdigest founder and CEOEagle Genomics Symposium 2014.org

Page 2: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative
Page 3: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

!

Page 4: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative
Page 5: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA

Page 6: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA

Page 7: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

CATTATGCCAGAAGTAGAATGAGGTGGTGCAACAGTATAACCCTAACCCTAACCCTAACCCTAACCCTAACCCTCTGAAAGTGGACCTATCAGCAGGATGTGGGTGGGAGCAGATTAGAGAATAAAAGCAGACTGCCTGAGCCAGCAGTGGCAACCCAATGGGGTCCCTTTCCATACTGTGGAAGCTTCGTTCTTTCACTCTTTGCAATAAATCTTGCTATTGCTCACTCTTTGGGTCCACACTGCCTTTATGAGCTGTGACACTCACCGCAAAGGTCTGCAGCTTCACTCCTGAGCCAGTGAGACCACAACCCCACCAGAAAGAAGAAACTCAGAACACATCTGAACATCAGAAGAAACAAACTCCGGACGCGCCACCTTTAAGAACTGTAACACTCACCGCGAGGTTCCGCGTCTTCATTCTTGAAGTCAGTGAGACCAAGAACCCACCAATTCCAGACACACTAGGACCCTGAGACAACCCCTAGAAGAGCACCTGGTTGATAACCCAGTTCCCATCTGGGATTTAGGGGACCTGGACAGCCCGGAAAATGAGCTCCTCATCTCTAACCCAGTTCCCCTGTGGGGATTTAGGGGACCAGGGACAGCCCGTTGCATGAGCCCCTGGACTCTAACCCAGTTCCCTTCTGGAATTTAGGGGCCCTGGGACAGCCCTGTACATGAGCTCCTGGTCTGTAACACAGTTCCCCTGTGGGGATTTAGGGACTTGGGCCTTCTGTCTTTGGGATCTACTCTCTATGGGCCACACAGATATGTCTTCCAACTTCCCTACACAGGGGGGACTTCAAAGAGTGCCTTGAGCTGATCTGGTGATTGCTTTTTTGTACTGTTATTTATCTTATTCTTTTCATTGTGAGGTACTGATGCAAACACTTTGTACGAAAAGGTCTTTCTCATCTCGGGAGTCCCCGTCTATTTGTCCCGGTCCCTGTTAACCCAGTCCCCGACAGGAGCCCCTTCTGCACCTTGAGCTCTCACCACTCACCGTCCATCCAGCCCCAGCTCTGCCTGCAACCCACCCATCCCTGGGACTCGGGCCTCCCCTCTCTAGTGGTCTGGTCATCAGGCCAGGGGCACGTGGAAGAAGCTATCGTGGCAAAGGGAGCAGTCATATCCCCAAAATCTGTGGTTGGTTTACCACCACCATGGAAACCCCAGGGTGGGACTCTAGTTTCAGGTTGGAGCTGAGCCCTGTCGGGAATGAGCTTTCCCCAGCTATGGCTTCTTGGGGCCCCTGTGCCCTGAGCTGTGTCTCCCAGCATCGGGTCCCCACCATGCATATGGCCCACTCAGGCACAGTGCCGCGATGGCTGCATGCGTGAGGGGGGCCTGGGCCCAGGGCTGGGAGTCCTTTGTGTCTCATGGCCATGATTGTCCTTCCGAGTATGATATGGTGGCCAATTTCTTTTATTCTGTCGTTCAGAGTGAGTAAATGATGTAGAGTTCATGCAGAAAAAAATACAACAAAAACCAAGGGAACATAGAATTGGAAAACGCGTCACAGCAATGAGTTAAATAGGTAACAAATTTCATCATTTGAAGAAAGACTTAGAGTGCCAAAAGTGCCTCTTAAGTCTCCTTTAAAAAGTAGCAAAATTCATCCCTGAAGAAGCATCTTGGCCTTTTTCATGTACTCAGAGTGCTGGTGAAGAACAAAGATTGCTGAAACATTATGTACCTAACAGCGTTACAGGGTGTAGATAACACACTGGAAAACCTGGTCGTTACAGTGGA

Page 8: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

Why is no more data available to provide evidence-based results?

Page 9: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

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)

Page 10: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

deadlock

Page 11: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

• Data discovery• Data access• Incentives

You are invited!

Page 12: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

• Connectivity• Aggregation• Immediate access

Page 13: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

DEMO

Page 14: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative
Page 15: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative
Page 16: Eagle Bioinformatics Symposium: 6. Fiona Nielsen, Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research - the DNAdigest initiative

Secure the data – share the knowledge

@DNAdigest

Support our work at http://tiny.cc/funddna

.org

http://tiny.cc/funddna

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