2 May 2019
ELIXIR and the Global Alliance for Genomics and Health (GA4GH) have announced a Strategic Partnership that will provide technical standards and regulatory frameworks to facilitate responsible sharing of genomic data across national borders. The effort will enable the creation of a secure infrastructure to store, access, and analyse genomic and sensitive health data from tens of millions of participants across and beyond Europe.
To translate the advances of genomics research into healthcare and realise the potential of personalised medicine, researchers must be able to responsibly interrogate the world’s collective genomic data as a single virtual cohort that transcends the capacity — and jurisdiction — of any single organisation or country.
As healthcare operates on a national level and is subject to national laws, it is often not possible to move health data from one country to another into a centralised database of genomics data. Therefore, the global genomics community must work together to create interoperable standards and frameworks that will allow users to analyse sensitive data in a virtual environment. With the new Strategic Partnership, ELIXIR and GA4GH will do exactly that, extending an ongoing collaboration between the two organizations that began in 2013.
ELIXIR, the pan-European infrastructure for life science data, and GA4GH, the international standards organisation for genomics, will work together — along with several other international genomic data initiatives — to develop a suite of technical and policy solutions to store, access, transfer, and analyse sensitive data in a secure virtual environment.
Taking into account the legal and ethical constraints of data providers and the requirements of researchers and healthcare professionals, this federated ecosystem will help reach the European Union’s goal of providing transnational access to at least one million genomes by 2022.
“By 2025 data from millions of participants will be available from genomics initiatives around the world,” said ELIXIR Director Niklas Blomberg. “However, the research community is not prepared to use these data effectively, because they are difficult to find and re-use beyond the original project that generated them. The federated infrastructure for human genomics we are building with GA4GH will enable population-scale genomics data to be accessible across international borders, accelerating research and improving the health of European citizens.”
“GA4GH’s suite of transparent, reliable standards and frameworks will create a secure environment to link data across multiple infrastructures around the world,” said GA4GH CEO Peter Goodhand. “ELIXIR’s deep engagement in this endeavour will ensure this infrastructure is fit-for-purpose and meets the specific needs of the European genomics community.”
The Strategic Partnership will provide mutual benefits to both ELIXIR and GA4GH. By connecting with ELIXIR’s 23 Nodes, GA4GH will gain stronger engagement across Europe and have better insight into the continent’s unique regulatory and scientific framework for genomic data. ELIXIR in turn will have a more significant role in shaping the emerging global standards being developed by GA4GH, ensuring they are compatible with European regulations, and address the scientific needs of European researchers.
The Global Alliance for Genomics and Health (GA4GH) is an international, nonprofit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. Bringing together 500+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology, the GA4GH community is working together to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. www.ga4gh.org
ELIXIR unites Europe’s leading life science organisations in managing and safeguarding the increasing volume of data being generated in publicly funded research. It coordinates, integrates and sustains bioinformatics resources across its member states and enables users in academia and industry to access vital data, tools, standards, compute, and training services for their research. www.elixir-europe.org