Data sharing efforts to promote genomic medicine

25 October 2014

The Global Alliance for Genomics and Health (Global Alliance) has held its second international meeting of partners at the Annual Meeting of the American Society of Human Genetics (ASHG) in San Diego, California.

Formed in 2013, the Global Alliance is an international coalition ‘dedicated to improving human health by maximizing the potential of genomic medicine’. In particular, it is focused on creating a common framework for the effective, responsible and secure sharing of genomic and associated data, to facilitate research and clinical practice.

Last month the Global Alliance adopted a formal Constitution; around 140 organisations of more than 200 that signed an original letter of intent are reported to have already signed up to the Constitution to become full members; the PHG Foundation is among these 140 .

The meeting shared progress on different data sharing projects within the Global Alliance’s programme, including a global BRCA Challenge, which seeks to share genetic and phenotypic information to improve the clinical interpretation of cancer risks associated with BRCA1/2 gene variants.

David Altshuler, Chair of the Global Alliance Steering Committee and Deputy Director of the Broad Institute of Harvard and MIT said: “Our members are dedicated to producing work products and to undertaking data sharing projects that break down barriers and increase learning from data”.

Meanwhile in the UK, non-profit DNA Digest, which similarly aims to improve genomic data sharing to underpin research, has launched a social enterprise venture.  DNA Digest, which supports ‘accessible, reproducible and citable research’ that is shared whilst maintaining the privacy and confidentiality of research participants, has created spin-out Nucleobase.

Nucleobase will develop Open Source software tools for researchers. They have already produced a beta-version social media platform for testing that is intended to help researchers find and access datasets and establish international collaborations quickly and efficiently.

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