Vancouver – DNA sequencing is revolutionizing health care and with the advancement of technology it has become more affordable to accumulate vast amounts of genomic data. These large and complex datasets – often called “Big Data” – provide an essential platform that inform the provision of health care and help patients in Canada and around the world. This can happen only if data is accessible and widely shared in a manner that fully protects patient privacy.
To address barriers that exist in sharing this data both in Canada and internationally, Genome British Columbia (Genome BC) and TELUS Health are supporting a pan-Canadian program called Can-SHARE. This program will create the policies and tools for Canadian clinicians and researchers to share genomic and clinical datasets across Canada and with international partners in a more effective manner without compromising confidentiality.
In the Can-SHARE Project, University of British Columbia researcher, Dr. Jan Friedman is leading an effort to develop standards to enhance newborn screening by using genomic approaches while maintaining the widespread public support for this important public health program. Newborn screening tests babies for conditions that can cause serious life-long disabilities or chronic disease if not treated shortly after birth.
Can-SHARE co-applicant, Dr. Anne Junker based at BC Children’s Hospital, leads the Maternal Infant Child & Youth Research Network of Canada (MICYRN) which is hosted at the Child & Family Research Institute. MICYRN links 20 maternal-child research institutes across the country and will provide practical tests of a number of innovative policies and procedures developed by Can-SHARE.
“At TELUS Health, we believe that personalized medicine has the potential to transform health care for all Canadians,” said Dr. Brendan Byrne, Chief Innovation Officer at TELUS Health. “We are delighted to work with expert stakeholders like Genome BC to overcome the potential barriers to creating this exciting future. Our work with Genome BC will help us realize the potential denormalization of genomic data holds for research and health outcomes.”
The $3.3 million in funding for Can-SHARE is provided from multiple sources, including Genome Canada, the Canadian Institutes of Health Research, Genome British Columbia, Génome Québec, and the Ontario Ministry of Research and Innovation. In addition, TELUS Health and Genome BC will equally support approved Can-SHARE pilot projects to over $800,000. The projects, which will be selected from proposals submitted by researchers from across Canada, will demonstrate how effective and responsible genomic data sharing can be used to improve human health. Further details on this genomic medicine pilot project funding opportunity will be announced shortly.
“Building the right infrastructure to share genomic health data is essential in bringing to bear the full potential of this technology to improve human health,” says Dr. Alan E. Winter, President and CEO, Genome BC. “BC has the talent to be at the table and Genome BC is proud to work with TELUS and lead new initiatives that will focus on doing just that in a responsible, effective manner.”
Can-SHARE is led by McGill University Professor Dr. Bartha Maria Knoppers, Chair of the Public Population Project in Genomics and Society (P3G), and co-led by Dr. Jan Friedman of the University of British Columbia and Dr. Michael Brudno of The Hospital for Sick Children in Toronto. Other team members include some of Canada’s most renowned clinicians and researchers in genomics and related areas of health science.
The program will strengthen Canada’s ability to help rapidly advance the objectives of the Global Alliance for Genomics and Health, which is looking to create a common strategy using functional approaches and initiatives to enable the responsible, secure and effective sharing of genomic and clinical data for the benefit of patients worldwide.
The Global Alliance for Genomics and Health (GA4GH) was formed in 2013 and today brings together over 375 leading institutions worldwide working in healthcare, research, disease advocacy, life science and information technology. Can-SHARE will further the objectives of the GA4GH, and will also impact other international bodies with investments in big data, including several international consortia where Canada plays a major role.
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