Seven Toronto Research Organizations Join New Non-Profit Global Alliance for the Responsible Sharing of Genomic and Clinical Data

Dr. Catharine Whiteside, Dean of the University of Toronto Faculty of Medicine and Vice Provost, Relations with Health Care Institutions, today announced that seven of Toronto’s leading research organizations have joined together in an unprecedented global alliance of more than 70 organizations engaging over 40 countries around the world. The alliance aims to set new, unified standards for managing and sharing of genomic and clinical data to enable rapid progress in biomedical research and to advance human health.

The past decade has brought about an explosion of genomic data in medical research. But currently much of this data is collected and analyzed in isolation – by disease, by country, or by institution – limiting its impact. The alliance aims to bring together ethics, privacy, medicine, research and technology to set new, unified standards that will allow data across the world to be shared in a responsible, ethical manner. A standardized system will allow for the aggregation of data and help researchers worldwide collaborate to tackle more complex problems with more efficiency.

“To realize personal, genomic-based treatments for disease, we must pool expertise and break down institutional barriers,” says Dr. Whiteside. “By integrating U of T’s thriving community of researchers, teachers and clinicians, this alliance will have a powerful impact on health locally and globally.”

The seven University of Toronto-affiliated organizations participating in the alliance are the Samuel Lunenfeld Research Institute at Mount Sinai Hospital, Sunnybrook Health Sciences Centre, The Hospital for Sick Children (SickKids), University Health Network, University of Toronto and the Ontario Institute for Cancer Research, which also serves as the Secretariat for the International Cancer Genome Consortium.

“International cooperation is essential to make personal medicine a reality,” says Dr. Stephen Scherer, Director of the University of Toronto’s McLaughlin Centre and The Centre for Applied Genomics at SickKids. “The alliance will create a robust framework, enabling scientists to collaborate and bring treatments to patients sooner.”

“Mount Sinai Hospital’s Samuel Lunenfeld Research Institute is proud to be a founding member of this global alliance. An alliance of this scope will be instrumental in resolving some of the major hurdles to bringing new genomics knowledge and technology into medical practice and will ensure timely translation of genomics discoveries into improved population health,” says Dr. Katherine Siminovitch, Director, Personalized Genomics and Innovative Medicine at Mount Sinai Hospital who has developed a genetic test for a rare and usually fatal immune deficiency disorder called Wiskott-Aldrich Syndrome. Dr. Siminovitch has also identified gene variants associated with risk for rheumatoid arthritis and other debilitating autoimmune diseases.

“Our collective understanding of human biology has never been better positioned to facilitate its application toward understanding the genetic basis of health and disease,” said Dr. Michael Julius, Vice-President, Research of Sunnybrook Health Sciences Centre. “The delivery of precision, individualized medicine is within our grasp, and the inception of the Global Alliance will be a critical enabler of achieving the goal responsibly.”

“University Health Network is pleased to join the Global Alliance,” said Dr. Benjamin Neel, Director of the Ontario Cancer Institute – the research arm of the Princess Margaret Cancer Centre.  “As an organization which is now offering personalized cancer medicine through the IMPACT and COMPACT studies, we see cooperation around the world on genetic studies as an important direction for all research facilities. In our early work with IMPACT – and with our capabilities with clinical sequencing of genes – we have seen the resulting information on individual patients change approximately 30 per cent of the treatment courses for those enrolled in this clinical trial. This study provides the only ongoing clinical sequencing in Canada with results delivered to patient medical records.”

“At present, it is generally not possible to predict which changes in DNA sequence lead to clinical consequences. Only by comparing each personal genome sequence to a large repository of other such data can robust patterns and relationships be identified,” said Dr. Tom Hudson, Chairman of the Executive Committee of the International Cancer Genome Consortium, and President and Scientific Director of the Ontario Institute for Cancer Research. “The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy.”