What is the structure of the FinnGen project?

FinnGen is a collaborative, pre-competitive, public-private research project that aims to understand human diseases using genomic data combined with the rich Finnish health registry data.

The FinnGen research project aims to produce genome variant data of 500,000 Finnish individuals, which is almost 10% of the entire Finnish population.

Why Finland?

FinnGen Partners

FinnGen is a partnership between

• Finnish universities

• research institutes

• biobanks

• hospital districts

• several international pharmaceutical companies

The University of Helsinki is the legal entity responsible for the study. All current FinnGen Partners are listed here.

Governance of FinnGen

The overall governance of FinnGen is described here.

The Steering Committee and the Scientific Committee oversee the FinnGen study.

• Steering Committee (highest decision-making body)

• University of Helsinki (legal entity responsible for the study)

Both committees have representatives from the University of Helsinki, each biobank, and each pharma partner.

• University of Helsinki (specifically, FIMM) coordinates the FinnGen study

• Helsinki Biobank (the Hospital District of Helsinki and Uusimaa) coordinates the sample collection

• THL acts as the data controller of the register data

Steering Committee

The University of Helsinki, biobanks, pharma partners, Business Finland, and FinBB each have the right to appoint one representative to the FinnGen Steering Committee. The responsibilities of the Steering Committee include major strategic decisions and monitoring the progress of the project against the deliverables, milestones and high-level objectives of the Scientific Plan.

Scientific Director

Professor Aarno Palotie (University of Helsinki) has been appointed as the Scientific Director of the study, and is responsible for the overall conduct and output of the Scientific Plan.

The Scientific Committee

Establishes and oversees the various working groups within the project and advises the Scientific Director. The Scientific Committee is composed of the Scientific Director, working group leaders and scientific representatives appointed by the University of Helsinki, biobanks, and pharma partners.

Project Managers, support and administrative support

Dr. Mervi Aavikko and Dr. Huei-Yi Shen have been appointed as FinnGen co-Project Managers and Dr. Risto Kajanne as the FinnGen Project Coordinator. Dr. Mari Kaunisto is the Communications Director and responsible for the proactive public dissemination of the study.

Several teams consisting of close to 40 members have been established to take care of the execution of the study.