Million European Genomes Alliance: the Netherlands should join
In April 2018, thirteen European countries signed a declaration of cooperation ‘towards access to at least one million sequenced genomes in the European Union by 2022’. On behalf of a wide range of stakeholders assembled in Health-RI, Gert-Jan van Ommen (BBMRI-NL) and Ruben Kok (DTL) have sent a letter to the Dutch Minister for Healthcare encouraging the Netherlands to co-sign the international declaration and actively participate in this Million European Genomes Alliance (MEGA).
MEGA aims to realize cross-border access to genomic information of the participating countries. Professor van Ommen: “The target is to make the genome information of at least one million European citizens accessible for joint European research as if it were one large cohort, while the data remains safely stored locally. Sharing genomic data across borders will improve our fundamental understanding of diseases such as cancer, brain disorders, and rare diseases, creating possibilities for personalized treatment and prevention. The immediate association of our country is essential to enable us to influence the approach, direction, and priorities of the MEGA initiative from the start.”
MEGA will allow European countries to collaborate on the secure and authorised access to national and regional banks of genetic data and other relevant data. The Alliance adheres to the FAIR principles of secure data exchange, where the accessibility of personal information is controlled by citizens themselves – in accordance with European standards for privacy protection. The MEGA declaration foresees to:
- bring together fragmented infrastructure and expertise supporting a shared and tangible target:
- one million genomes accessible in the EU by 2022; leverage and maximize the investments already made by Member States at national and European level, particularly in sequencing, biobanking, and data infrastructure;
- establish a cohort of sufficient scale for new clinically impactful research.
Dr Ruben Kok: “The wide range of parties that have signed the letter to the Dutch Minister for Healthcare underscores the unprecedented value of the MEGA approach, for Europe and for the Netherlands. The Dutch research community has built up excellent resources and a strong track record in genome-based studies to really bolster this project. We advocate the immediate association of our country with this international initiative.”
28 June 2018 / revised 5 July 2018