Finland's digital genome project

Finland has embarked on one of the most ambitious efforts worldwide to bring together genome and digital health information. Very soon, data of one tenth of the population will be available for cutting-edge analytics.

During a keynote session at this year’s HIMSS & Health 2.0 European Conference, Aarno Palotie and Mark Daly of the Institute for Molecular Medicine Finland (FIMM) introduced the FinnGen project. It aims at collecting individual healthcare and genomic data of 500.000 Finns.

Around 290.000 individuals have already signed in, and in February 2019, some 146.000 datasets were already available for analytics.

The project, Palotie said, drew on the long Nordic history of collecting medical data for registries. These longitudinal clinical datasets, tied together by the individual’s social security number, can be correlated with biobank data of the respective individual for medical research of all kind, made possible by a broad, research-friendly consent scheme introduced through the Finnish Biobank Act.

“This offers a huge potential for discoveries that transform our understanding of diseases”, said Daly. For example, a specifically Finnish genetic predictor of inflammatory bowel diseases was discovered recently. Other genetic predictors have been discovered or verified in asthma and diabetes at this early stage of the project already.

“What is essential is that the computational environment in which the analytics are done is entirely secure. Similarly important is a high degree of autonomy of the individual: Everybody can withdraw consent at any time. It is completely voluntary.”

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