Canadian researchers to develop framework for responsible, secure and effective sharing of genomic and clinical datasets across Canada and with international partners
Genome Canada and the Canadian Institutes of Health Research (CIHR) today announced a $3.3 million investment in Can-SHARE – a pan-Canadian program that will enable innovation in the use of genomic data for health care for patients in Canada and worldwide. 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.
Can-SHARE is led by McGill University Professor Dr. Bartha Maria Knoppers, Chair of the Public Population Project in Genomics and Society (P3G), an international consortium dedicated to the development and management of multi-disciplinary research infrastructures around the world. Can-SHARE is co-led by Dr. Michael Brudno of The Hospital for Sick Children in Toronto, and Dr. Jan Friedman of the University of British Columbia. Other team members include some of Canada’s most renowned clinicians and researchers in genomics and related areas of life science.
The program will strengthen Canada’s ability to help rapidly advance the objectives of the Global Alliance for Genomics and Health (GA4GH), which is looking to create a common strategy using interoperable approaches and initiatives to enable the responsible, secure and effective sharing of genomic and clinical data for the benefit of patients worldwide.
- The $3.3 million in funding for Can-SHARE is provided from multiple sources, including Genome Canada, CIHR, Génome Québec, Genome British Columbia and the Ontario Ministry of Research and Innovation. In addition, TELUS and Genome British Columbia will support approved Can-SHARE “New Initiatives”, as Pilot Projects. These initiatives will be dedicated to improving human health by maximizing the potential of genomic medicine through effective and responsible data sharing. ,/span>
- The program will draft a number of policies related to consent, privacy and security, paediatrics, accountability, and ethics review equivalency. It also involves demonstration projects that touch on data related to rare diseases, cancer and other disease areas.
- 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 reach beyond to impact other international bodies with investments in big data, including several international consortia where Canada plays a major role such as the International Cancer Genome Consortium, International Rare Disease Research Consortium, and International Human Epigenomic Consortium.
“We are a government that believes in science and that good scientific knowledge should inform decision making. Through this new investment in Can-SHARE, our world-class researchers will be taking a leadership role in enhancing and facilitating collaboration and data sharing with the ultimate goal of improving the health and well-being of Canadians and people worldwide.”
– The Honourable Kirsty Duncan, Minister of Science
“This Canadian team is perfectly positioned to contribute towards achieving the goals of the Global Alliance for Genomics and Health. They are building on years of expertise and a track record of excellence in genomic research, including research on the complex ethical, economic, environmental, legal and social issues surrounding this rapidly-advancing field of science and technology.”
– Dr. Cindy Bell, Interim President and CEO of Genome Canada
“Investing in big data sharing to improve patient care in Canada and around the world is a priority for CIHR. We are delighted to partner with Genome Canada to support Can-SHARE, an innovative program that will facilitate better collaboration among clinicians and researchers throughout Canada and beyond.”
– Dr. Paul Lasko, Scientific Director of CIHR’s Institute of Genetics
“With this initiative Canada’s international leadership in the genomic policy arena will be reinforced. Its founding role in the GA4GH has been recognized and supported. Now, the actual and emerging challenges of international data sharing can be addressed”
– Dr. Bartha Maria Knoppers, Can-SHARE Project Leader
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About Genome Canada
Genome Canada is a not-for-profit organization that invests in genomic science and technology and its translation into applications across multiple sectors to produce social and economic benefits for all Canadians.
The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened health care system for Canadians. Composed of 13 Institutes, CIHR provides leadership and support to more than 13,000 health researchers and trainees across Canada.