As genomic medicine moves towards standard of care, sharing human genomic data across borders, systems, and research and clinical environments has been a major global challenge.
The Global Alliance for Genomics and Health (GA4GH) was established to tackle some of the issues associated with the genomic data revolution, in particular to develop international standards and policies that would promote easier access to and the responsible use of that data.
The breadth of that work is now captured in the international journal Cell Genomics, which dedicates its latest issue to the GA4GH.
The open-access publication includes an extensive list of tools and resources developed by alliance members, academic papers, global policies and models for data sharing, and an overview of different workstreams. It also includes commentary and interviews with the GA4GH senior executive.
Vice-Chair Professor Kathryn North, who also leads Australian Genomics and is Director of the Murdoch Children’s Research Institute, points to the evolving nature of the alliance since it was formed in 2013.
“Our activities then focused on the development of standards across the continuum from consent, clinical data capture, genome sequencing, data presentation and analysis, data storage and access – and everything in between – underpinned by robust approaches to regulatory and ethical frameworks and data security,” she tells readers.
“While the development of standards continues to evolve, we are now shifting our focus to external engagement and partnering with major genomics initiatives to ensure adoption and implementation of the standards in real-world settings.”
The GA4GH has grown to more than 600 members across 90 countries. They include organisations working in healthcare, research, patient advocacy, life science and information technology.
GA4GH Chair Ewan Birney and Chief Executive Officer Peter Goodhand said the edition marked an important milestone in the evolution of the organisation. The entire GA4GH community had come together across time and space to deliver the resources described in the special issue.