ICGC datasets that catalogue tumour-specific mutations are unrestricted and freely available to the scientific community. However, the ICGC developed an authorization process to distribute clinical and inherited genetic data associated with unique individuals in order to minimize the risk of identification of donors based on computer analyses of demographic, clinical or genetic data.
Controlled Access datasets are scientifically valuable in revealing potential diagnostic, prognostic or drug-response biomarkers that could inform cancer treatment decisions. To facilitate these discoveries, the DACO access process was optimized to be short, user-friendly and compatible with cloud compute/storage services.
“ICGC is supported and framed by robust ethics policies and procedures that ensure governance while facilitating access. Today's milestone is proof of its success,” said Bartha Knoppers, Chair of the ICGC Ethics and Governance Committee and Director of the Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University.
“We have reached this major milestone with a commitment to open science access but to also protect individual privacy through our controlled access procedure,” said Don Chalmers, Chair, International Data Access Committee, ICGC and Deputy-Director of the Centre for Law and Genetics at the University of Tasmania.
‘’DACO’s important role providing access to the ICGC controlled data demonstrates the potential of international governance approaches for data sharing,’’ said Yann Joly, Data Access Officer, ICGC DACO and Research Director, Centre of Genomics and Policy at McGill University.
“This is a great achievement that demonstrates how scientific collaboration can drive innovation and strengthen Ontario’s reputation as a leader in cancer research. I’m pleased Ontario’s researchers are leveraging the ICGC data and I’m excited to see how this will lead to future cancer diagnostics and treatments for patients in Ontario and potentially around the globe,” said Reza Moridi, Ontario's Minister of Research and Innovation.
ICGC Controlled Data users are mainly from North America (49 per cent), Europe (33 per cent) and Asia (14 per cent). The proportion of academic to industry users is approximately 87 per cent to 13 per cent. A growing demand for the Consortium’s Controlled Access Data is due to the richness of the data collected by ICGC member projects. Most applicants are granted access to the Consortium data within a week of their initial application.
About the ICGC
ICGC has received commitments from funding organizations in Asia, Australia, Europe, North America and South America for 88 project teams in 17 jurisdictions to study more than 25,000 tumour genomes. The ICGC is committed to making data rapidly and freely available. The ICGC Data Coordination Centre’s most recent data release in total comprises data from 14,767 cancer genomes (http://www.dcc.icgc.org).
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