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Global Genomics Alliance presents vision for genomic and clinical data sharing

Research News
Friday, June 10, 2016 - 9:00am
Today, in a landmark article in leading international journal Science, the Global Alliance for Genomics and Health (GA4GH) has shared its vision and progress on a global clinical and genomic data-sharing initiative to allow clinicians and scientists across the world to access and use data to tackle genetic diseases and cancer to improve human health.

One of the leaders of the GA4GH is Professor Kathryn North, Director of the Murdoch Children's Research Institute (MCRI). Professor North (pictured below) is co-Chair of the GA4GH Steering Committee and chairs its Clinical Working Group.  

GA4GH was established two years ago to accelerate the potential of genomic medicine. Today, it counts more than 400 organisations and more than 700 individuals in its membership. Member organisations include the National Institute for Health and the National Cancer Institute (USA) and the Wellcome Trust (UK).

“In such a short time, the Global Alliance has engaged the major players in over 70 countries and created practical solutions to share clinical and genomic data,” said Professor North.

“Through the Global Alliance, major national initiatives such as the US Cancer Moonshot, Genomics England, Genome Canada, H3Africa and the Australian Genomics Health Alliance (AGHA) are pooling their expertise and data to tackle rare disease and cancer.

“Strong international partnerships are key to solving major health problems quickly and cost effectively.”

Peter Goodhand, GA4GH Executive Director, said the Alliance’s vision for responsible and effective data sharing will enable clinicians and scientists to make best use of the millions of genome sequences that currently sit in siloed databases around the globe. He said that previously, data has been stored in silos: by type, by disease, by country or by medical institution.

Genomics is a rapidly advancing field worldwide. It examines an individual’s complete set of genetic information, known as the genome, to identify changes that may impact on health.

“There is enormous potential to improve diagnosis and provide more personalised treatment and management of medical conditions through genomics,” said Professor North.

“In principle, this wealth of integrated genomic data and clinical information could reveal the genetic bases of cancer, inherited disorders and infectious diseases, which impact people across the world.”

The central role of MCRI in the GA4GH cements Australia’s role as a global leader in genomics. The AGHA, led by Professor North and MCRI colleague Professor Andrew Sinclair, provides an international benchmark for the integration of genomics into a national healthcare system.

To date, the GA4GH has created a toolkit of diverse products, including a standardised application programming interface (API), which allows disparate technology services of institutions around the globe to communicate with one another to exchange clinical and genetic information.

Professor North said GA4GH projects are already breaking down global barriers, including the Beacon Project which has developed an open-ended approach to sharing data across the internet. GA4GH has also established an international collaboration among breast cancer genetics experts called the BRCA Challenge, and a peer-to-peer network of clinicians, Matchmaker Exchange.

In addition to outlining successes, today’s Science paper notes a variety of remaining challenges to sharing data across national and institutional boundaries.

For example, the GA4GH membership is currently working on solutions to secure data access while maximising the scope of information that can be shared.

"Millions of genome sequences are being generated around the globe, but to gain the full benefits from these data — to advance human health and to prevent and treat disease — laboratory and clinical investigators will need more effective means of access to data, regardless of where the data are stored,” said Professor Harold Varmus of Weill Cornell Medical College, former Director of the U.S. National Cancer Institute, and Chair of the GA4GH Scientific Advisory Board.

“The only way to do that is for the global community to come together across traditional boundaries — be they national, institutional, or technical — to create a system that works for everyone. The GA4GH has begun to do that in the projects described in this new report.”

About the Global Alliance for Genomics and Health

The Global Alliance for Genomics and Health is an international, non-profit alliance formed to accelerate the potential of genomic medicine to advance human health. Bringing together over 400 leading organizations working in healthcare, research, disease and patient advocacy, life science, and information technology, GA4GH Members are working together to create a common framework of tools, methods, and harmonized approaches and supporting demonstration projects to enable the responsible, voluntary, and secure sharing of genomic and clinical data.

Learn more about Professor Kathryn North's career: