The Wellcome Trust Sanger Institute recently unveiled an international initiative to promote the sharing of standardised genetic and clinical data. More than 60 leading healthcare, research and disease advocacy organisations from across the world are joining together to form an international alliance dedicated to enabling secure sharing of genomic and clinical data.
Each of these organisations have signed a 'Letter of Intent', pledging to work together to create a not-for-profit, inclusive, public-private, international, non-governmental organisation (modelled on the World Wide Web Consortium, W3C) that will develop a common framework.
In January 2013, 50 colleagues from eight different countries met to discuss the current challenges and opportunities in genomic research and medicine, and how they could work together to foster medical progress. They concluded that the greatest need was a common framework of international standards designed to enable and oversee the sharing of genomic and clinical data in an effective, responsible, and interpretable manner.
Following the circulation of a White Paper from the meeting, more than 60 organisations from North and South America, Europe, Asia and Africa have joined together to form a non-profit global alliance which will work to develop a common framework, that enables new research based on shared data while protecting participant autonomy and privacy.
