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Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)

Yann Joly, Edward S. Dove, Bartha M. Knoppers, Martin Bobrow, Don Chalmers, Philip E. Bourne
2012 PLoS Computational Biology  
Acknowledgments The authors wish to express thanks to both members of ICGC and data users, whose questions and feedback have been instrumental in the design and implementation of controlled  ...  To address this lacuna, we present the experience of the Data Access Compliance Office (DACO) of the International Cancer Genome Consortium (ICGC).  ...  Figure 1 . 1 ICGC-DACO tiered access process and storage of controlled ICGC data. The Ontario Institute for Cancer Research (OICR) in Toronto is the host of the ICGC Data Coordination Center (DCC).  ... 
doi:10.1371/journal.pcbi.1002549 pmid:22807659 pmcid:PMC3395593 fatcat:kbjelm57oreo5lxoxzfg7vssgy

Data Access Governance [chapter]

Mahsa Shabani, Adrian Thorogood, Madeleine Murtagh
2021 The Cambridge Handbook of Health Research Regulation  
Joly et al., 'Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)', (2012) PLoS Computational Biology, 8(7),  ...  Tiered Access: International Cancer Genome Consortium/25K Initiative The International Cancer Genome Consortium (now called the 25K Initiative) was a large-scale genomics research initiative aiming to  ... 
doi:10.1017/9781108620024.023 fatcat:t5dlcbm6ifgjljtuydbrwwkwym

Public–Private Partnerships in Cloud-Computing Services in the Context of Genomic Research

Palmira Granados Moreno, Yann Joly, Bartha Maria Knoppers
2017 Frontiers in Medicine  
To achieve this, we describe the details and complexities of MSSNG, International Cancer Genome Consortium, and 100,000 Genomes Project, the three PPPs that focus on large-scale genomic research to better  ...  In this article, we explore models of PPPs proposed to handle, protect, and share the genomic data collected and to further develop genomic-based medical products.  ...  ICGC Data Access Compliance Office (DACO) has approved access to 734 projects (including renewals) over the years 16,171 whole genomes sequenced.  ... 
doi:10.3389/fmed.2017.00003 pmid:28164085 pmcid:PMC5247451 fatcat:6hdziyv3ffdddlfzlzbnwpibru

Policy-Aware Data Lakes: A Flexible Approach to Achieve Legal Interoperability for Global Research Collaborations

Adrian Thorogood
2020 Journal of Law and the Biosciences  
This problem has been laid bare by the sudden shock of the COVID-19 pandemic.  ...  It can also be difficult for repositories to modify governance structures in response to changing scientific priorities, data sharing practices, or legal frameworks.  ...  Establishing a shared 15 International Cancer Genome Consortium, "About Us," (accessed January 11, 2020). 16 Yann Joly et al., Data Sharing in the Post-Genomic World: The Experience  ... 
doi:10.1093/jlb/lsaa065 pmid:33005429 pmcid:PMC7454728 fatcat:rtpwkaa5cfexrjlljvwkvwjxj4

Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks

Christine Aicardi, Lorenzo Del Savio, Edward S. Dove, Federica Lucivero, Niccolò Tempini, Barbara Prainsack
2016 Croatian Medical Journal  
International Cancer Genome Consortium The International Cancer Genome Consortium (ICGC) coordinates large-scale cancer genome studies in tumours from 50 different cancer types and/or subtypes that are  ...  // 457 Joly Y, Dove ES, Knoppers BM, Bobrow M and Chalmers B (2012) Data sharing in the post-genomic world: the experience of the International Cancer  ...  GMC General Interpretation Partnerships (GeCIP) 6.54 Genomics England Ltd (GeL) 6.54b (Box 6.7) access to data 6.57 consent and privacy concerns 6.58-6.61 decision to involve in '100,000 Genomes' Project  ... 
doi:10.3325/cmj.2016.57.207 pmid:27106361 pmcid:PMC4856186 fatcat:xky3yowt75g3lkcqhyhslfhenm

Data Protection and Ethics Requirements for Multisite Research with Health Data: A Comparative Examination of Legislative Governance Frameworks and the Role of Data Protection Technologies*

James Scheibner, Marcello Ienca, Sotiria Kechagia, Juan Ramon Troncoso-Pastoriza, Jean Louis Raisaro, Jean-Pierre Hubaux, Jacques Fellay, Effy Vayena
2020 Journal of Law and the Biosciences  
Accordingly, we adopt a comparative approach using the concept of data accessibility when examining data protection and research ethics laws in seven jurisdictions.  ...  Our paper then identifies the most significant regulatory barriers to the sharing of health-related data for multisite research.  ...  e Requires contractual or corporate governance mechanisms or equivalence. 145 Yann Joly et al., Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium  ... 
doi:10.1093/jlb/lsaa010 pmid:32733683 pmcid:PMC7381977 fatcat:2ssgfjrzhva3zevybhhndvofk4