Life @ CRG
Issue 3 July 2013
Newsletter of the Centre for Genomic Regulation
EU-LIFE: 1st community meeting at the CRG Gabrielle Bertier
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8th May, 8 pm. The first EULIFE community meeting participants gather, collect their badges and start looking for other people from their working group. For the past month, the 65 participants have been preparing this meeting from their home bases. They are distributed into 6 working groups focusing on: EU-LIFE strategy, with the directors of the 10 partner
institutes, translational research, grants, training, communication, and technology transfer. The next day, after words of welcome from Luis Serrano and Jo Bury, director of the VIB, Belgium, and a keynote lecture from Fabienne Gautier, deputy head of the European Research Area (ERA) policy, the groups divided into 6 separate rooms. Over
CRG JOINS GLOBAL ALLIANCE TO SHARE AND INTERPRET GENOMIC DATA Over 70 leading healthcare, research, and disease advocacy organisations involving scientists and collaborators from around the world have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data. The cost of genome sequencing has fallen and more and more people are choosing to make their genetic and clinical data available for research, clinical, and personal use. However, interpreting this data requires an evidence base for biomedicine larger than any one party alone can develop, and which adheres
four intense hours they worked hard, getting to know each-other, sharing success stories and challenges in their area of expertise, and setting up a joint action plan for EU-LIFE. At the end of the day, the elected group chairs presented detailed feedback on their discussions. At 6 pm, Jo Bury closed the meeting with these inspiring words for EU-LIFE: ‘we leave feeling like a family’. <
to the highest standards of ethics and privacy.These organisations recognise that the public interest will be best served if we work together to develop and promulgate standards (both technical and regulatory) that make it possible to share and interpret this wealth of information in a manner that is both effective and responsible. “Now that sequencing a genome is becoming cheaper, one single institution can’t cope with the vast amount of information coming from both the personal genomic data that users make available for research and the fast pace of biomedical findings”, says CRG director Luis Serrano. The Global Alliance will respond to important challenges and enable future advance that would be impossible for a single institution. The platforms will enable sharing and learning regardless of where the data is stored and will also protect participant autonomy and privacy. <