Genomics data-sharing grows worldwide

SAN DIEGO, Calif. – The Global Alliance for Genomics and Health convened its second major meeting of 2014 last weekend, bringing together more than 250 international leaders to collaborate on the development of innovative solutions to accelerate sharing of genomic and clinical data. At their plenary meeting, held in San Diego, Alliance members shared progress to date and discussed next steps for the effort.

The Global Alliance is an international coalition of over 140 member organizations dedicated to improving human health by maximizing the potential of genomic medicine. The group’s diverse membership includes world-leading institutions in healthcare, research, patient and disease advocacy, life science, and information technology. The partners are working together on open interfaces and projects to enable effective and responsible data sharing and guide this quickly evolving field.

“The Global Alliance has made rapid progress in its first year, growing from a startup to an organization that has a large and growing membership, a Constitution, a Framework for the Responsible Sharing of Genomic and Health Related Data, an Application Programming Interface and is actively supporting members’ data sharing projects,” said Peter Goodhand (pictured), Executive Director of the Global Alliance, who is based at the Ontario Institute for Cancer Research in Toronto, Canada. “We will continue to develop the necessary tools and methods required to share data broadly and responsibly for the public good, with the ultimate goal of accelerating progress in medicine worldwide.”

Following its formation in 2013, the Global Alliance has sparked collaboration that involves hundreds of stakeholders globally and released several major products, including a regulatory Framework to guide the responsible sharing of genomic and health-related data and a GA4GH Genomics API to streamline specific technical aspects of data sharing and allow for more seamless exchange globally.

The Alliance’s plenary meeting coincided with the Annual Meeting of the American Society of Human Genetics (ASHG), and the Global Alliance will also hold an information session for ASHG attendees on Monday, October 20.

In addition to highlighting best practices and developing targeted methods to advance responsible data sharing, Alliance members are advancing data sharing projects to demonstrate value and promote real-world learning. These include a global BRCA Challenge, which aims to learn from genotype and phenotype data from many studies without compromising patient privacy, thereby increasing the ability to interpret BRCA1 and BRCA2-related cancer risks.

Another example is the Matchmaker Exchange project, designed to help patients and doctors grappling with rare genotypes and phenotypes to overcome siloed data, find one another through a federated architecture, and work together.

“The Global Alliance’s work will allow researchers and clinicians to tap into the power of data networks on a global scale,” said Keith Yamamoto, Vice Chancellor for Research and Executive Vice Dean of the School of Medicine at the University of California, San Francisco (UCSF), who gave opening remarks at the meeting. “The Alliance is expanding the boundaries of data sharing to improve human health, while promoting meaningful standards. The field needs this effort as we move forward and work to harness the transformational potential of biomedicine.”

On September 18, 2014 the Global Alliance adopted a Constitution to formally guide and govern the structure and membership criteria of the organization. In less than a month, more than 135 organizations of the over 200 that had originally signed a Letter of Intent have already transitioned to full members of the Global Alliance for Genomics and Health. It is expected that many more organizations and individuals will do so in the coming months.

“At a time of rapid change, the Global Alliance is coming together for our second plenary meeting in San Diego to look ahead to our next steps and achievable goals in the next few years,” said Martin Bobrow, Vice Chair of the Global Alliance Steering Committee and Emeritus Professor of Medical Genetics at the University of Cambridge. ”As was evident at this critical meeting, the Global Alliance will continue to promote international collaboration to identify, develop, and promulgate innovative approaches to data sharing and to support efforts already underway.”

The Global Alliance for Genomics and Health is an international, non-profit alliance formed to help accelerate the potential of genomic medicine to advance human health. Bringing together over 140 leading organizations working in healthcare, research, disease and patient advocacy, life science, and information technology, partners in the Global Alliance are working together to create a common framework of standards and harmonized approaches to enable the responsible, voluntary, and secure sharing of genomic and clinical data. Learn more at http://genomicsandhealth.org.