Sharing genomic, clinical data

Hinxton, Cambridge, UK, 10 June 2016 - The Global Alliance for Genomics and Health (GA4GH), a partnership of more than 400 organisations in 70 countries, today calls for improved sharing of genomic and clinical data through a federated ‘data ecosystem’. In a perspective published in Science, international leaders in biomedical research argue that a common framework of principles, protocols and interoperable technical systems are necessary to enable responsible and effective data sharing.

Established in 2013, GA4GH partners are building tools and establishing standards to achieve that goal.

“These stakeholders are working together across traditional boundaries to create the common framework that will allow us to make best use of the millions of genome sequences that currently sit in siloed databases around the globe,” says Peter Goodhand, GA4GH Executive Director and one of the authors on today’s Perspective.

“The Global Alliance is a way to bring the strong desire to share data together with the technology and policy required to do so,” explains Paul Flicek of EMBL-EBI, a member of the GA4GH Steering Committee and co-chair of the Security Working Group with Dr Dixie Baker of Martin, Blanck and Associates. “As many countries, including a number in Europe, expand their use of genomic data for research and clinical care, the tools of the GA4GH will help make the most of this investment in knowledge gained about human health.”

The Genomics API created by GA4GH allows diverse technology services to exchange genotypic and phenotypic data. The Alliance’s Framework for Responsible Sharing of Genomic and Health Related Data outlines the basic principles and core elements for responsible data sharing.

GA4GH has catalysed the development of three data-sharing projects that aim to illustrate the value of sharing data in real world contexts. The Beacon Project is an open-ended approach to sharing data across the Internet; The BRCA Challenge is an international collaboration among breast cancer genetics experts; and Matchmaker Exchange is a peer-to-peer network of clinicians.

Today’s Perspective highlights challenges to sharing data across national and institutional boundaries, and notes how the GA4GH is working on solutions to secure data access while maximising the scope of information that can be shared. It also outlines how the partners are creating tools flexible enough to be readily implemented in different knowledge domains, and establishing sustainable funding models that support data quality assurance, hosting, and computation.

"Private funders and national governments will need to be involved on some level to support these activities so that clinicians and scientists may access as much free, curated data as possible," says Mike Stratton, Director of the Wellcome Trust Sanger Institute, CEO of the Wellcome Genome Campus and a member of the GA4GH Strategic Advisory Board. "The Sanger Institute has supported the Global Alliance since its inception as we are committed to helping researchers and clinicians access and freely share the genomic and related health data they need to transform human health."

Source article

Global Alliance for Genomics and Health (2016) A federated ecosystem for sharing genomic, clinical data. Science 352:1278-1280. Published online 9 June; DOI: 10.1126/science.aaf6162

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. http://genomicsandhealth.org/

Contact

Angela Page, GA4GH: Angela.Page@genomicsandhealth.org