The dramatically reduced cost of DNA sequencing has led to the accumulation of vast amounts of genomic data. These data – often called "Big Data" – are to genomic and clinical research what the Internet is to social media: the platform upon which collaboration and innovation are built. This can only happen, though, if data are accessible and widely shared – a distant reality, both in Canada and internationally. Some of the barriers to achieving this goal are technical, such as ensuring interoperability across institutional, provincial and national jurisdictions; others are socioethical and legal, such as differing consent, privacy and ethics review.
The Global Alliance for Genomics and Health (GA4GH) international consortia was created to promote, drive and demonstrate the value of responsible data sharing to advance genomic innovations. Canadian leaders of GA4GH, Drs. Bartha Maria Knoppers of McGill University, Michael Brudno of Toronto’s Hospital for Sick Children and Jan Friedman of the University of British Columbia, created the Canadian International Data Sharing Initiative (Can-SHARE) to drive the mission of GA4GH across Canada and abroad. Led by cross-cutting Policy Task Teams in pediatric, consent, privacy/security, accountability, and ethics review equivalency, Can-SHARE has developed policy tools to support data sharing in Canada and in the GA4GH. Can-SHARE has also supported Canadian-led Demonstration Projects, such as the Matchmaker Exchange for rare disease patients, the Beacon project for international genomics data sharing, and the BRCA Challenge for breast cancer. Finally, Can-SHARE has leveraged several Canadian Pilot Projects, including two led by BC-based researchers Dr. William Hsiao, who led the development of a web platform for epidemiological data sharing for health practitioners, and Dr. Bruce McManus, who explored the use of Blockchain technologies for data sharing and storage.
Collectively, Can-SHARE has contributed to the advancement of Canadian leadership to develop Big Data access and sharing efforts in Canada, as well as within the GA4GH and other international research consortia.