Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Our Strategic Road Map defines strategies, standards, and policy frameworks to support responsible global use of genomic and related health data.
Discover how a meeting of 50 leaders in genomics and medicine led to an alliance uniting more than 5,000 individuals and organisations to benefit human health.
GA4GH Inc. is a not-for-profit organisation that supports the global GA4GH community.
To guide our collaborative, globe-spanning alliance, GA4GH relies on a Standards Steering Committee and an Executive Committee.
The Funders Forum brings together organisations that offer both financial support and strategic guidance.
The EDI Advisory Group responds to issues raised in the GA4GH community, finding equitable, inclusive ways to build products that benefit diverse groups.
Distributed across four Host Institutions, our staff team supports the mission and operations of GA4GH.
Curious who we are? Meet the people and organisations across six continents who make up GA4GH.
More than 500 organisations connected to genomics — in healthcare, research, patient advocacy, industry, and beyond — have signed onto the mission and vision of GA4GH as Organisational Members.
These core Organisational Members are genomic data initiatives that have committed resources to guide GA4GH work and pilot our products.
This subset of Organisational Members whose networks or infrastructure align with GA4GH priorities has made a long-term commitment to engaging with our community.
Local and national organisations assign experts to spend at least 30% of their time building GA4GH products.
Anyone working in genomics and related fields is invited to participate in our inclusive community by creating and using new products.
Wondering what GA4GH does? Learn how we find and overcome challenges to expanding responsible genomic data use for the benefit of human health.
Study Groups define needs. Participants survey the landscape of the genomics and health community and determine whether GA4GH can help.
Work Streams create products. Community members join together to develop technical standards, policy frameworks, and policy tools that overcome hurdles to international genomic data use.
GIF solves problems. Organisations in the forum pilot GA4GH products in real-world situations. Along the way, they troubleshoot products, suggest updates, and flag additional needs.
NIF finds challenges and opportunities in genomics at a global scale. National programmes meet to share best practices, avoid incompatabilities, and help translate genomics into benefits for human health.
Communities of Interest find challenges and opportunities in areas such as rare disease, cancer, and infectious disease. Participants pinpoint real-world problems that would benefit from broad data use.
See all our products — always free and open-source. Do you work on cloud genomics, data discovery, user access, data security or regulatory policy and ethics? Need to represent genomic, phenotypic, or clinical data? We’ve got a solution for you.
All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
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Help create new global standards and frameworks for responsible genomic data use.
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2 Aug 2018
In a comment piece for The Lancet Oncology, a collaborative team of international researchers from GA4GH and beyond outlines the imperative for maintaining public trust in the use of health data for research.
In a comment piece published today for The Lancet Oncology, one of the world’s premier cancer journals, a collaborative team of international researchers outlines the imperative for maintaining public trust in the use of health data for research.
The comment piece follows recent discussions in the mainstream media about data privacy. Led by Mark Lawler, Chair in Translational Cancer Genomics at Queen’s University Belfast, Associate Director at Health Data Research UK, and an active member of the Global Alliance for Genomics and Health (GA4GH), the authors urge the health science community to talk more openly about using personal health data in research to enhance human health and eradicate diseases such as cancer.
The authors cite several national and international initiatives – including GA4GH and the UK’s 100,000 Genomes Project – that depend upon comprehensive data analytics to drive evidence-based solutions to improve health outcomes.
Professor Lawler said: “Personal health data is an extremely valuable commodity for research and should only ever be used in a responsible, ethical and secure way that is in the interest of society. Transparency on why and how we use data is vital if we are to maintain the social licence for data-driven research.”
Approaches to build public trust and restore confidence in use of health data are outlined in the comment piece, entitled: A roadmap for restoring trust in Big Data. These include:
Anna Middleton, Head of the Society and Ethics Research Group, Connecting Science at the Wellcome Genome Campus in Cambridge, UK and a co-author of the study said: “Public trust in data science is essential for large scale initiatives like these to deliver on their promise to enable significant breakthroughs in our understanding of human disease.”
Middleton also chairs the GA4GH Participant Values Task Team, which is leading a project to gather public attitudes towards genomic data sharing via the online survey, Your DNA, Your Say.
Professor Bartha Maria Knoppers, Director of the Center for Genomics and Policy at McGill University, co-chair of the GA4GH Regulatory and Ethics Work Stream, and co-author on the paper commented: “While public confidence in data security and integrity has recently come under scrutiny, this did not include the field of health data. It is important to emphasise the benefits of international data sharing and underscore the responsible frameworks put in place by scientists themselves to guard against possible misuse.”
Examples of existing frameworks and initiatives that are supporting the research community in its use of health data are highlighted. One of these is the GA4GH Framework for Responsible Sharing of Genomic and Health-related Data, which contains foundational principles and core elements for responsible data sharing and is guided by human rights, including the right to benefit from the progress of science, as well as privacy, non-discrimination, and procedural fairness.
Health Data Research UK, which was also involved in the piece, develops and applies cutting-edge data science approaches to clinical, biomedical and other multi-dimensional data to address the most pressing health challenges facing the public. It uses safe principles – safe people, working on safe data, in safe places, with safe outputs – to establish a robust research and governance infrastructure that is necessary for the analysis of big data and, importantly, to secure trust.
Understanding Patient Data is an independent patient data task-force that is enabling better conversations about the uses of health information through its work with patients, charities, and healthcare.
Professor Lawler concludes: “Public confidence in how data is used has been significantly compromised in recent months. It is incumbent on all of us to advocate the value of health data research to society and to promote the need for robust, trustworthy and ethical approaches to deliver new health advances for our citizens.”