Toronto, ON- The International Cancer Genome Consortium (ICGC) has hit another milestone as its Data Access Compliance Office (DACO) has authorized its 1,000th user, giving them access to the consortium’s Controlled Access datasets.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.
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.
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