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MG-NL identifies obstacles to use and reuse genomics data

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MG-NL, the Dutch ‘mirror group’ of the European Million Genomes Initiative made an inventory of available genome sequences in the Netherlands. A first analysis clearly identified some major obstacles for the use and reuse of genomics data in research. These concern patient consent and linkage of Genome Sequences to relevant clinical data in a privacy preserving manner. In the next months, MG-NL will be developing a roadmap for the future and actively participate in the European 1MG project.

The Dutch core team (MG-NL) of the European Million Genomes Initiative (EMGI), represents experts from different backgrounds, such as patient organizations, clinical geneticists, pathologists, researchers, sequencing facilities and research funders. As a first step, an inventory was made of the currently available genome sequences in the Netherlands. This resulted in approximately 100.000 sequences of which the vast majority is not directly accessible for research purposes. Most sequences concern Whole Exomes Sequences (WES) and less than 10% are Whole Genomes (WGS). These results were discussed by the MG-NL core group to determine which steps are needed to permit the use and reuse of genomics data for research on personalized health and medicine in the Netherlands.

The EMGI aims 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 and create possibilities for personalized treatment and prevention. The research cohort will be accessible by 2022.

The MG-NL initiative is initiated and coordinated by Health-RI. The start-up of MG-NL is supported by the ZonMw Personalised Medicine program, co-funded by Zilveren Kruis and the Dutch Cancer Society.

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