A Global Alliance for sharing genomic and clinical data
EMBL and EMBL-EBI have joined the Global Alliance, a large-scale, international effort to enable the secure sharing of genomic and clinical data. The Global Alliance invites commercial and not- for-profit organisations to join forces with other leading data, health care, research, and disease advocacy organisations to establish an evidence base for genomic research and medicine that adheres to the highest standards of ethics and privacy.
As the cost of sequencing continues to fall, more people are choosing to make their genetic and clinical data available for research. However, managing and interpreting these data requires resources that are larger than any one party can develop on its own.
A White Paper circulated in early 2013 has the support of nearly 70 organisations in Asia, Australia, Africa, Europe, North America and South America who are committed to creating a common framework that supports data analysis and protects the autonomy and privacy of participating individuals. Signatories of an accompanying Letter of Intent to create a not-for-profit, inclusive, public–private, international, non-governmental organisation include healthcare providers, research institutions, disease advocacy groups, life science and information technology companies. Many more are expected to join.
“This is an excellent initiative and we are very proud to be a part of it,” says Janet Thornton, Director of the EMBL-European Bioinformatics Institute in the UK. “As part of the Global Alliance and members of ELIXIR, we can help make this vision a reality. Sharing data and information is at the heart of our mission, and developing resources that enable innovation is a large part of what we do. The European Genome-phenome Archive, the Embassy Cloud, and BioMedBridges are just a few projects at EMBL-EBI that can support the alliance’s technical standards for interoperability as well as for data access and security.”
“The ability to collect and analyse large amounts of genomic and clinical data presents a tremendous opportunity to learn about the underlying causes of cancer, inherited and infectious diseases, and responses to drugs,” says David Altshuler, Deputy Director of the Broad Institute of Harvard and MIT in the US. “However, we will only realize this opportunity if we can establish effective and ethically responsible approaches to share data. We believe that by working together, and by committing to the principle that each individual has the right to decide whether and how broadly to share their personal health information, we can accelerate progress in life sciences and medicine.”
“The European Genome-phenome Archive (EGA) is just one example of what the Global Alliance is trying to achieve,” adds Paul Flicek of EMBL-EBI. “It matches up genome data with other features while protecting key information about patients, but applying for access can be complicated. Streamlining the process for a researcher to gain access to these datasets would have a dramatic, positive impact on research.”
The Global Alliance will foster innovation in a number of ways, notably though the establishment of open standards supporting the development of interoperable information-technology platforms for biomedicine. These platforms will enable sharing and learning from data, wherever it may be stored.
To express your interest in joining the Global Alliance, please contact theglobalalliance@oicr.on.ca.
Further reading
A full list of participating organisations can be found on the websites of the Wellcome Trust Sanger Institute and the Ontario Institute for Cancer Research.
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