Global Alliance for Genomics & Health: losing sight of health?

5 March 2014

The Global Alliance for Genomics and Health (Global Alliance) has held its first meeting of international partners at the Wellcome Trust in London.
 
The Global Alliance for Genomics and Health is an international coalition of partners who are working together to create interoperable approaches that will facilitate the sharing of genomic and clinical data to accelerate both research and clinical implementation of personalised medicine (see previous news), aims entirely in accordance with the PHG Foundation’s mission of making science work for health.
 
Now comprising almost 150 members (including the PHG Foundation) drawn from the world’s leading biomedical research institutions, healthcare providers, disease and patient advocacy organisations and other related bodies, the Global Alliance seeks to develop methods for the responsible aggregation, analysis and sharing of data.
 
One of the newest members of the Global Alliance is Google, who are developing Google Genomics, a web-based application programming interface (API) for genomic data, currently accessible as a limited preview release only to approved researchers. The intention is to provide a secure cloud-based system for both private and publicly available genomic data that will support easy, accessible data processing and analysis.
 
The first partner meeting involved nearly 200 international experts in genomics and biomedicine, related technologies, healthcare and ethics, working together to develop coordinated efforts to harmonise methods and approaches to catalyse rapid progress in medical applications whilst protecting patient and research participants’ autonomy and privacy.
 
Four working groups have already been convened to progress different aspects of this effort:
  1. Genomic Data Working Group - examining data representation, storage, and analysis.
  2. Security Working Group - ensuring sensitive information is kept secure.
  3. Regulatory and Ethics Working Group - ethics and legal and social issues, including data governance.
  4. Clinical Working Group - identifying best practices and establishing links with phenotypic and clinical (health) informatics data.
Dr Francis Collins, Director of the National Institutes of Health said: “The Global Alliance for Genomics and Health is a key next step in the efforts that began with the Human Genome Project. We know that genomic medicine is poised to have a transformative impact, but we still face significant barriers to deploying it effectively”.

Commenting on the meeting of 4th March 2014, PHG Foundation Director Dr Hilary Burton said: “As a partner organisation the PHG Foundation will continue to press the Global Alliance to keep its eye on the ultimate goal, which is better health. The Global Alliance is set to be a big player in the field of genomics research and we believe it should also use its influence to be a powerful advocate for change in health systems. Developing new knowledge is not enough; enabling health services and the people they serve to use this effectively and responsibly will require an equivalent endeavour”. 

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