FinnGen project

The FinnGen study is based on a public-private partnership between Finnish universities, biobanks, hospital districts, and several international pharmaceutical companies, to drive research, implementation, and economic development in the field of personalized medicine.

The data created during the study will be used to deepen our understanding about the origins of diseases and their treatment and for prioritising drug targets based on genomic information, enabling more efficient drug development pipelines and better individualized drug treatment choices. FinnGen aims to open new possibilities for domestic biotechnology companies, several of which have already expressed interest, and the Finnish business environment.

Please note that FinnGen is not an open access resource and the individual-level data is only accessible to the researchers representing the consortium partners. You can get more information about the access request process by contacting Risto Kajanne (risto.kajanne@helsinki.fi). The summary statistics and GWAS results are made publicly available every 6 months.

The project aims to produce close to complete genome variant data of 500 000 biobank participants using GWAS genotyping. Read more about the genotyping array here. 

The GWAS data are combined with phenotype data produced from several national health registries. More information about the clinical endpoint and control definitions is available on this page. 

The collected samples consist of two entities: 1) legacy samples (prospected number about 200 000), mainly collected by the THL (National Institute for Health and Welfare)  and 2) about 300 000 prospective samples which will mainly be collected by hospital biobanks.

The project is expected to continue for ten years, with a current budget of €93M. Funding comes from thirteen international pharmaceutical companies and Business Finland. The active phase during which biobank samples are collected and genotyped is planned to continue for six years. The FinnGen Project is divided into two phases, FinnGen 1 (years 1-3) and FinnGen 2 (years 4-6) and started in August 2017.

FinnGen capitalizes on Finland’s decades-long investments in Finnish health care, health registries, epidemiological research, and biobanks. Recent modernization of the regulatory environment (e.g. the Biobank act and the bill on Secondary usage of registry data) enables extensive utilization of national sample cohorts to advance medical research, patient care, and drug development.

FinnGen will utilize the extensive longitudinal registry data available on all Finns. The opportunity to define informative and multi-dimensional phenotypes from this data is the key element of FinnGen. Data from these registers provide longitudinal, life time follow-up data from each Finnish resident. Combining data from different registries provides opportunities to construct reliable disease endpoints as well as novel long-term phenotypes of disease progression and therapeutic response. The longitudinal structure of register data enables to construct treatment trajectories that are difficult to accomplish in most other parts of the world. FinnGen has organized a clinical team and working working groups around key clinical areas of focus shared by many partners in conjunction with Finnish clinical experts to develop these phenotypes in more detail.

More information about the partner organizations and their roles can be found from here. The organizational structure and decision making process of the study are described here.

The FinnGen will manage anonymous health registry and genomic data without compromising the privacy and integrity of participants. The project will also develop imputation methods that enable achieving near-complete genome variant information without whole genome sequencing. The unique history of the Finnish population makes this a realistic aim. The genomic data produced during the project will be returned to Finnish biobanks, providing the basis for new industrial partnerships, drug trials, monitoring studies, and other private-public projects.