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.
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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.
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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.
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17 May 2017
In a perspective paper published in the New England Journal of Medicine (NEJM), members of the Global Alliance for Genomics and Health (GA4GH) Clinical Cancer Genome Task Team call on the international community to put more resources – people, data, infrastructure and policy change – toward cancer genomic data sharing.
In a perspective paper released today in the New England Journal of Medicine (NEJM), members of the Global Alliance for Genomics and Health (GA4GH) Clinical Cancer Genome Task Team call on the international community to put more resources – people, data, infrastructure and policy change – toward cancer genomic data sharing.
“Cancer does not respect national borders, so the international community needs to work together to make headway on this disease that kills over 8.5 million people worldwide each year,” said Professor Mark Lawler of Queen’s University Belfast, who is senior author of the paper and co-chairs the Clinical Cancer Genome Task Team with Charles Sawyers of the Howard Hughes Medical Institute and Memorial Sloan-Kettering Cancer Center, New York. “Creating a functional data ecosystem is a critical component of the Precision Medicine Initiative and our ability to share data across institutions will greatly empower this initiative,” said Sawyers.
The article is the fourth in a series of academic papers published by the task team, including a blueprint for data sharing in cancer published in Nature Medicine in May 2016. This paper brought forward a series of recommendations for effective technical, clinical, ethical and legal approaches to international data sharing.
Results from the first comprehensive global survey of clinical cancer sequencing initiatives were published by the task team this month in the Annals of Oncology. “The survey demonstrates that there is great interest in data sharing and that people recognize it’s value,” said Lawler. “But they also see certain barriers and there is still some resistance.”
Such barriers include non-standardized methodologies and approaches to data collection and analysis, a lack of “thoughtful integration” of data across centres and nations, absence of an effective mechanism for academic recognition, and limited dedicated funding.
“We cannot underestimate the value of collecting data longitudinally. In cancer, it is critical not only to link genomic and clinical data at diagnosis, but also to follow the patient over time, uncovering clues that help us to judge the success of therapies but also combat treatment resistance,” said Lawler. In the NEJM perspective paper, he and his colleagues highlight the need for a dedicated funding mechanism that allows national governance structures to work together to support data sharing.
For instance, the U.S. Cancer Moonshot has set forth the need to bring together genomic, epidemiologic, and clinical data to improve patient outcomes.
“Effective responsible data sharing is critical if we’re to really use the research data to help us in our aspiration to improve outcomes in this deadly disease,” said Sawyers, who is a member of the Cancer Moonshot Blue Ribbon Panel.
“While cancer as a whole is common, it is actually more of a rare disease if we think about each person’s unique genotypic and phenotypic characteristics,” said Melissa Haendel of Oregon Health & Science University, who is also a co-author of the paper. “This is fundamentally the reason that we need global patient data sharing.”
The Cancer Moonshot panel on data sharing, which included Haendel and other members of the GA4GH community, aimed in part to promote the idea that patient generated data, clinical data, and research data all need to be utilized together and developed with interoperability in mind from the start. Such an aspiration depends on both effective collaboration as well as dedicated resources. “This requires technical, legal, social, regulatory, and financial solutions to sharing. What we are calling for is ecosystem-level change and commitment,” said Haendel.
“We hope that our ‘Call to Action’ for a ‘Global Cancer Knowledge Network’ energizes the community to act decisively and encourages our national institutions to dedicate resources to embed data sharing in all our cancer activities,” Lawler said.