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Better sharing of genetic information in human health

Montral, September 12, 2013 Since the sequence map of the human genome, the cost of sequencing the genome of an individual has fallen rapidly. This has resulted in a tremendous increase in the amount of human genomic data available to the international research community for the advancement of biomedical research. Yet, there is an absence of international mechanisms to support researchers in ensuring ethical and legal interoperability. In addition, the multiplicity and diversity of laws, standards and policies on sharing and accessing genetic and medical data represent major hurdles to international collaboration.

To address this gap, the Public Population Project in Genomics and Society (P3G), in partnership with the Centre of Genomics and Policy (CGP) at the McGill University and Gnome Qubec Innovation Centre, is proud to announce the launch of the IPAC, (International Policy interoperability and data Access Clearinghouse), a new resource to both promote the interoperability of international norms and to facilitate the sharing of clinical and research data.

Building on the expertise of P3G and the CGP, the IPAC will offer a "one-stop" service for national and international collaborative research projects. It will provide normative tools and frameworks that respect the laws and regulations of each country while facilitating access.

"As a policy interoperability tool provider and a data access broker, the IPAC will harmonize projects to ensure successful ethics, privacy and access review, thereby reducing unnecessary bureaucracy and delays," said Professor Bartha Maria Knoppers, co-founder of P3G, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy.

"We applaud the development of new resources that serve to advance research in Qubec. IPAC is a great example of how concerted, forward-looking action can help to meet current and future challenges in genomic research and enhance the capacity for action and influence of Qubec research on the international scene," explained Jean-Franois Lise, Minister of International Relations, La Francophonie and External Trade.

Located in Montral at the McGill University and Gnome Qubec Innovation Centre, the IPAC will provide the international scientific community with the expertise and ethical frameworks needed to create an information clearinghouse and support structure.

"Gnome Qubec has always encouraged international collaborations, since they are critical to the advancement of genomic research. This confirms just how important it is to support projects like P3G, the driving force behind the IPAC resource. We are pleased to be able to leverage its activities of recent years in support of the scientific community," said Marc LePage, President and CEO of Gnome Qubec.

"McGill University is proud to be a founding partner of IPAC, and we thank P3G, CGP, and Professor Knoppers for their leadership on this important initiative," said Dr. Rose Goldstein, McGill's Vice-Principal (Research and International Relations). "International partnerships and interdisciplinary research are fundamental to McGill's research enterprise. We believe that by helping world-class researchers to work more collaboratively, regardless of discipline or country, we ensure that the strongest ideas will be applied to the transformative field of genomics."


Contact: Éva Kammer
Gnome Qubec

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