FinnGen Explained: How Finland’s National Genomics Project Began, Evolved, and Where It Is Heading

Who Should Read This Article?#

• Researchers and professionals interested in genomic medicine, biobanking, and large-scale health data research.
• Readers seeking to understand the structure, achievements, and differences between national-scale research initiatives such as FinnGen and UK Biobank.
• Researchers, industry professionals, and policymakers involved in public–private research partnerships, genomic drug discovery, and the responsible use of healthcare data.

Executive Summary#

• FinnGen is a national-scale genomic research initiative launched in Finland in 2017. It integrates samples from existing biobanks with nationwide health registry data, bringing together academic institutions and pharmaceutical companies to advance biomedical research and drug discovery.
• FinnGen achieved its original target of collecting genomic and health data from approximately 500,000 participants in 2023. As of 2026, it is in its third phase, FinnGen 3, with an increasing focus on disease mechanisms, disease progression, and treatment response.
• Unlike UK Biobank, FinnGen was developed primarily by leveraging existing biobank samples and nationwide healthcare registries, enabling the efficient construction of a large-scale genomic research resource.
• Its success reflects a distinctive combination of Finland’s Biobank Act, comprehensive national health registries, population-specific genetic characteristics, and a public–private research partnership.
• Major challenges include participant selection bias, the generalizability of findings to other populations, limitations of registry-based phenotyping, clinical translation, privacy protection, and long-term sustainability beyond 2027.

1. What Is FinnGen?#

FinnGen is a national-scale genomic research initiative launched in Finland in 2017. Its goal is to integrate existing biobank resources with nationwide health registry data and accelerate drug discovery through collaboration with pharmaceutical companies.[1]

FinnGen achieved its original goal of collecting genomic and health data from approximately 500,000 individuals in 2023. The project is currently in its third phase, FinnGen 3, which is scheduled to continue until 2027.[1][2]

Its research emphasis has evolved from identifying genetic variants associated with diseases toward understanding disease mechanisms, disease progression, and individual responses to treatment.

FinnGen at a Glance#

The following table summarizes the project's key indicators as of November 4, 2026.

Item	Details
Project launch	2017
Research participants	Approximately 520,000
Share of Finland's population	Approximately 10%
Total project budget	Approximately €157 million (as of January 2026)
Latest publicly released GWAS	2,755 disease endpoints (DF13)
Project duration	2017–2027 (through the scheduled completion of Phase 3)
Leading research institution	Institute for Molecular Medicine Finland (FIMM), University of Helsinki
Main research objectives	Discovery of disease-associated genetic variants, understanding disease mechanisms, and supporting drug discovery

The figure of approximately 520,000 refers to the overall genotyped cohort. The 2,755 disease endpoints refer to those analyzed in DF13, released in June 2026.[3][4][5]

Four key points are particularly important for understanding FinnGen.

1. FinnGen resembles UK Biobank, but its underlying design philosophy is different. UK Biobank is a prospective cohort that directly recruited a large number of participants and conducted detailed physical assessments and lifestyle surveys. FinnGen, by contrast, is primarily a registry-based research resource built upon existing biobank samples and nationwide healthcare records.

2. FinnGen's development depended on institutional conditions specific to Finland. These include the 2013 Biobank Act, nationwide healthcare data infrastructure, an established network of biobanks, and distinctive population genetics.

3. Its funding and governance model is unusual. Universities, public biobanks, and pharmaceutical companies jointly establish research priorities within a precompetitive research framework.

4. Its future challenges concern the transition from data quantity to data quality and practical value. Important issues include participant selection bias, limitations of registry information, generalizability across populations, validation of causal mechanisms, clinical implementation, and long-term sustainability.

2. How FinnGen Was Conceived and Developed#

FinnGen did not emerge suddenly in 2017.

Its creation was made possible by decades of progress in Finland's biobanking framework, healthcare information infrastructure, and population genetics research.

2013: Establishing the Institutional Foundation#

Finland's Biobank Act came into force in 2013.

The legislation established a framework for systematically collecting, storing, and using biological samples for medical research.

It also helped create the conditions for using existing hospital biobanks and population cohorts across institutional boundaries.[6]

2017: Official Launch of FinnGen and Phase 1#

FinnGen officially launched on August 15, 2017.

Led by the Institute for Molecular Medicine Finland (FIMM) at the University of Helsinki, the project aimed to integrate genotype data from approximately 500,000 individuals with information from nationwide health registries.

A collaborative structure involving pharmaceutical companies and public research institutions was adopted from the outset.[1]

2018–2020: Expanding the Sample and Data Infrastructure#

During this period, FinnGen advanced several foundational activities:

• Genotyping biological samples from participating biobanks.
• Linking participant information to nationwide health registries.
• Establishing disease definitions and genome-wide association study (GWAS) analysis pipelines.
• Developing the infrastructure necessary for large-scale genomic research.

In 2020, FinnGen also began making analysis results publicly available to the wider research community.[4][5]

2021–2023: Phase 2 and the Expansion of Genetic Discovery#

FinnGen expanded both the number of research participants and the disease endpoints available for analysis.

In January 2023, a foundational paper was published in Nature, reporting discoveries of disease-associated genetic variants enabled by the distinctive genetic structure of the Finnish population.[7]

By September 2023, FinnGen had assembled a dataset covering approximately 500,000 individuals, achieving its original recruitment and data collection target.[1]

2023–2027: Phase 3 and the Shift Toward Disease Mechanisms#

FinnGen 3 began in August 2023.

The project secured approximately €52 million in additional funding and expanded its research activities to include:

• Disease trajectories before and after diagnosis.
• Individual responses to medications.
• Proteomics.
• Single-cell analyses.
• Molecular mechanisms underlying genetic associations.

This phase represents a shift from identifying genetic associations toward understanding how those associations influence disease biology and treatment outcomes.[2]

2026: Expanding Data Resources and Molecular Analysis#

In June 2026, FinnGen released the GWAS results of DF13.

In August 2026, results from a single-nucleus multiome analysis involving 1,108 participants were also released.[5][8]

These developments illustrate a broader transition in FinnGen's strategy.

Rather than continuing to increase participant numbers as its primary objective, the project is now placing greater emphasis on extending longitudinal follow-up and enriching the molecular information available for existing participants.

Why Was FinnGen Possible in Finland?#

FinnGen is best understood not as an entirely new biobank created from scratch, but as an initiative that connected multiple research assets already available in Finland.

Three components were especially important.

1. Existing biobanks

FinnGen uses biological samples and DNA collected through hospital biobanks and established research cohorts.

2. Nationwide health registries

Finland has extensive longitudinal healthcare records, including information on diagnoses, prescriptions, cancer, and mortality.

3. Genomic analysis capabilities and distinctive population genetics

Finland's population genetic characteristics can facilitate the discovery and interpretation of variants associated with disease.

By integrating these three elements, FinnGen established a research resource shared by universities, biobanks, and pharmaceutical companies.

Several additional factors supported this design:

• Legal and data infrastructure: The Biobank Act provided a framework for managing biological samples, while national health registries offered extensive longitudinal clinical information.
• Research infrastructure: FIMM, established epidemiological and population genetics research programs, and Finland's existing biobank network provided the scientific foundation.
• Industrial policy: National strategies supporting healthcare and life sciences, together with early funding from Business Finland, helped support the initiative.
• Scientific advantages: Finland's population history created opportunities to study relationships between certain low-frequency genetic variants and diseases.

The Finnish Biobank Cooperative, FINBB, established in 2017, also became part of the institutional infrastructure supporting unified access to Finnish biobanks.[1][6]

It is important to distinguish these enabling conditions from the precise history of how the project was first proposed.

The available public materials do not conclusively establish who initially conceived FinnGen or the exact point at which the 500,000-participant target was formally proposed.

3. Distinctive Features of FinnGen#

3.1 Research Design: FinnGen Compared with UK Biobank#

Both FinnGen and UK Biobank are large-scale biomedical research initiatives involving approximately 500,000 participants.

However, FinnGen should not simply be regarded as a Finnish version of UK Biobank.

Important differences exist in participant recruitment, data collection, and research infrastructure.

Comparison	FinnGen	UK Biobank
Launch	2017	Established in 2003; large-scale recruitment began in 2007
Participants	Approximately 520,000	Approximately 500,000
Study population	Individuals contributing to Finnish biobanks	Residents aged 40–69 at recruitment
Recruitment	Primarily uses existing biobank samples	Participants recruited directly
Health information	Primarily nationwide health registries	Baseline questionnaires, physical assessments, surveys, and healthcare records
Genomic data	Primarily SNP arrays and imputation	Whole-genome sequencing at the full-cohort scale
Key strengths	High numbers of disease cases, low-frequency variants, longitudinal healthcare records	Detailed phenotyping, lifestyle and environmental information, imaging data
Research access	Summary statistics released publicly; individual-level data subject to authorization	Approved researchers use designated research analysis infrastructure
Industry participation	Pharmaceutical companies jointly participate in research design and analysis	Companies participate in research access and data enrichment

Sources: FinnGen's official documentation and UK Biobank's Our History, Who We Are, and About Our Data.[1][9][10]

These differences have substantial implications for the kinds of research each initiative supports.

UK Biobank is particularly strong in detailed, multidimensional measurement of health and long-term follow-up.

FinnGen is particularly strong in using information accumulated through routine healthcare to investigate relationships between genetic variation and disease at scale.

3.2 Finland's Distinctive Population Genetic Structure#

One of FinnGen's most important scientific characteristics is the historical formation of the Finnish population.

Past population bottlenecks and relative geographical and cultural isolation have resulted in certain low-frequency genetic variants being more common in Finland than in other European populations.

Consequently, variants that would require extremely large sample sizes to detect elsewhere may be statistically easier to identify in FinnGen.

The foundational 2023 Nature paper demonstrated how Finland's population genetic structure facilitates the identification of protein-coding variants associated with disease.[7]

However, this scientific advantage also creates a limitation.

Findings based on genetic variants enriched in Finland may not always generalize readily to populations elsewhere.

3.3 Efficient Reuse of Existing Biological Samples#

FinnGen did not directly recruit every participant through a new research program.

Instead, it used samples previously collected by participating biobanks and generated new genotype data from those samples.

These genetic data were then linked to national health registries containing information such as:

• Disease histories.
• Medical procedures.
• Prescription medications.
• Mortality records.

FinnGen's SNP arrays measured approximately 700,000 genetic markers.

Using reference genome datasets and genotype imputation, the project estimated a much larger number of genetic variants.

This means that FinnGen did not directly sequence the complete genomes of all participants.[4][11]

By adopting this approach, FinnGen was able to establish a large-scale genomic research resource without creating a nationwide network of new examination centers.

3.4 Public–Private Research Partnership#

FinnGen's operating model differs from research projects supported exclusively by conventional public research grants.

Its consortium brings together:

• Universities.
• Hospitals.
• Biobanks.
• Public research institutions.
• International pharmaceutical companies.

The consortium currently consists of 30 partners: 15 Finnish organizations and 15 international pharmaceutical companies.[1]

Its governance structure includes several key functions.

Steering Committee

The Steering Committee is the project's highest decision-making body.

It oversees strategy, budgets, and research objectives, with representation from both academic or public institutions and pharmaceutical companies.

Scientific Committee and Research Groups

These groups are responsible for research planning, analysis, and scientific output.

University of Helsinki and FIMM

The University of Helsinki and FIMM serve as the central research organizations, supporting project operations and secure research environments.

This governance structure allows public institutions and pharmaceutical companies to jointly support and use the research infrastructure.

3.5 Funding Model#

FinnGen's funding structure is another distinctive feature.

As of January 2026, its cumulative project budget was approximately €157 million.[3]

The funding breakdown is summarized below.

Funding source	Approximate amount
Pharmaceutical companies and related contributions	€137 million
Business Finland	€20 million
Total	€157 million

Source: FinnGen's official funding information.[3]

This arrangement differs from a model in which individual pharmaceutical companies simply purchase access to datasets.

Instead, multiple companies jointly support the research infrastructure and participate in precompetitive research.

At the same time, this model requires ongoing governance to balance:

• Public research interests and commercial applications.
• The timing of research publication.
• Fair access to research resources.
• Accountability in the use of sensitive health information.

4. Scientific Achievements and Current Research#

4.1 Establishing a Large-Scale GWAS Resource#

FinnGen achieved its original participant target by 2023.

In November 2024, it released DF12, containing GWAS results from approximately 500,000 individuals.

On June 2, 2026, FinnGen released DF13, incorporating updated information from health registries.[5]

Indicator	DF12 (2024)	DF13 (2026)
Participants included in analysis	500,348	500,186
Genetic variants analyzed	Approximately 21.31 million	Approximately 21.31 million
Disease endpoints	2,502	2,755

Source: FinnGen's official Access Results documentation.[5]

The number of participants changed only slightly between these releases.

Instead, the primary advances were extended disease follow-up and an increase in the number of disease endpoints.

Minor differences in participant counts between releases can arise from quality control and related analytical procedures.

4.2 A Major 2026 Achievement: Immune Cell Multiome Research#

On September 30, 2026, a paper entitled Population-scale immune multiome atlas reveals regulatory disease mechanisms was published in Nature.[8]

The study simultaneously analyzed gene expression and chromatin accessibility in approximately 10 million immune cells obtained from 1,108 FinnGen participants.

It generated testable hypotheses about which genes are regulated by genetic variants associated with disease.

This study illustrates an important change in the direction of FinnGen research.

Traditional GWAS primarily asks:

Which genetic variants are associated with a particular disease?

The newer generation of molecular research asks:

In which cells do these variants act, and how do they influence gene function?

This transition is essential for moving from statistical genetic associations toward a mechanistic understanding of disease.

4.3 Research Toward Personalized Treatment#

In 2026, research was also published on genetic predictors associated with adverse effects of blood pressure-lowering medications, reflecting progress toward more individualized treatment.[1]

Such studies indicate the potential value of FinnGen for pharmacogenomics and personalized medicine.

However, an important distinction must be maintained.

Discovering a genetic association or identifying a plausible molecular mechanism is not the same as demonstrating that a new medicine or clinical test has been successfully developed and implemented.

5. Current Challenges Facing FinnGen#

Although FinnGen has successfully established a large-scale genomic research resource, it continues to face important scientific and operational challenges.

The following sections distinguish limitations explicitly described in published research from broader issues relevant to the project's future development.

5.1 Participant Selection Bias#

This limitation has been explicitly identified in published research.

A substantial proportion of FinnGen participants come from hospital-based biobanks.

This composition is advantageous for discovering disease-associated genetic variants because the dataset includes many individuals with diagnosed conditions.

However, it also means that FinnGen is not necessarily representative of the Finnish population as a whole.

For example, the 2023 Nature paper reported that the proportion of individuals with type 2 diabetes was:

• 14.5% in FinnGen.
• 8.2% in FinRegistry, a nationwide population registry resource.[7]

This difference illustrates the influence of the sampling and recruitment strategy.

The implications are particularly important for:

• Predictive models of disease onset.
• Estimates of absolute disease risk.
• Studies of disease progression.

Such analyses require appropriate adjustment and validation to address selection bias.

5.2 Generalizability Beyond Finland#

This is a scientific challenge.

Finland's distinctive population genetic structure is an important advantage for genetic discovery.

However, the same characteristics can complicate the application of findings to other populations.

Several issues arise:

• Variants that are relatively common in Finland may be extremely rare or absent in other countries.
• Differences in genetic background and environmental exposures may affect the performance of disease prediction models.
• Variants identified in Finland must be evaluated to determine whether they have comparable effects in populations with different ancestries.

The foundational FinnGen paper also discusses the difficulty of replicating findings involving variants that are uncommon in other European populations.[7]

For this reason, joint analyses with resources such as UK Biobank, the Estonian Biobank, and BioBank Japan can be particularly valuable.

5.3 Limitations of Registry-Based Phenotyping#

This is a research design challenge.

Nationwide health registries are extremely powerful, but routine healthcare records do not necessarily capture every dimension of a patient's health or disease.

For example, the following information may not always be available at sufficient detail for a particular research question:

• Lifestyle factors.
• Disease severity.
• Detailed clinical findings.
• Responses to treatment.
• Patient-reported outcomes.

In addition, a diagnosis recorded in a healthcare registry does not necessarily correspond to the true biological onset of disease.

FinnGen 3 is addressing some of these limitations by incorporating additional data, including:

• Laboratory measurements from KANTA registries.
• Medications administered in hospitals.
• Information on medical procedures.[2][11]

These additions are intended to improve the depth and precision of disease phenotyping.

5.4 Moving from Genetic Associations to Causal Mechanisms and Treatments#

This is a central objective of FinnGen's current research phase.

Identifying a genetic variant associated with disease does not automatically establish:

• Whether the variant itself is causal.
• Which cells and genes mediate its effects.
• Whether an intervention targeting the relevant biological pathway can improve disease outcomes.

FinnGen 3 is investing in proteomics, immune profiling, and single-cell analyses to help bridge this gap.[2]

The 2026 immune cell multiome study provides a concrete example of progress in this direction.[8]

The next steps require more than identifying molecular mechanisms.

They also involve:

• Validating potential drug targets.
• Demonstrating actual treatment effects.
• Establishing clinical utility in real healthcare settings.

5.5 Balancing Privacy Protection and Data Access#

This is an ongoing governance challenge.

FinnGen's datasets contain highly sensitive information, including genetic data and longitudinal medical records.

Under the current framework, research data are pseudonymized and analyzed in controlled environments.

A distinction is maintained between publicly accessible summary statistics and individual-level participant data.

Although pharmaceutical companies provide funding and participate in research, they do not thereby become the owners of biological samples or individual-level datasets.

Biobank participants also retain the right to withdraw their biobank consent.[1][6][11]

Access to individual-level data is not based on unrestricted downloading.

External researchers must obtain separate authorization through mechanisms involving organizations such as Findata or FINBB.[11]

Consequently, FinnGen must continually balance two objectives:

Protecting the security and privacy of sensitive research data while enabling scientifically valuable and equitable access.

Reducing administrative complexity and disparities in access among researchers remains an important operational consideration.

5.6 Long-Term Sustainability Beyond 2027#

This is a future strategic issue.

The current FinnGen 3 project is scheduled to conclude in 2027.

However, the genomic and healthcare data resources developed through FinnGen will remain scientifically valuable beyond that date.

According to official project descriptions, genomic data generated through FinnGen are returned to Finnish biobanks, where they can be used in future research.[1][2]

Several long-term considerations therefore arise:

• Securing research funding.
• Maintaining computational and analytical infrastructure.
• Continuously updating longitudinal health information.
• Managing data access permissions.
• Sustaining governance arrangements that balance commercial use with public benefit.

It is important to emphasize that these are strategic sustainability considerations, not evidence that FinnGen is currently experiencing financial distress or that its data infrastructure will be shut down in 2027.

The public materials reviewed for this article do not conclusively establish a permanent operating model for the period beyond 2027.

6. Lessons from FinnGen's Development#

6.1 From Building Data Assets to Delivering Clinical Value#

FinnGen's development can be understood in three broad stages.

Stage	Period	Main objectives and activities
Phases 1 and 2: Building data assets	2017–2023	Integrating biological samples and national healthcare records; establishing a genomic resource covering approximately 500,000 individuals
Phase 3: Deepening scientific value	2023–2027	Investigating disease progression, treatment response, molecular mechanisms, and multiomics
Next stage: Realizing clinical and societal value	Future strategic direction	Drug discovery, disease prevention, clinical implementation, and long-term sustainability

For organizations considering similar national-scale initiatives, FinnGen offers three particularly important lessons.

6.2 Recruiting a New Cohort Is Not the Only Way to Build Large-Scale Research Infrastructure#

The first lesson is that newly recruiting a large prospective cohort is not the only viable approach to establishing a national-scale biobank research program.

If existing biological samples can be linked reliably to high-quality healthcare information, it may be possible to develop a large-scale research resource in a relatively short period.

FinnGen provides a concrete example of this approach.

Rather than building every component from scratch, the project connected and integrated existing research assets.

6.3 Separate Data Ownership, Research Funding, and Access Rights#

The second lesson concerns institutional design.

It is important to distinguish:

• Who owns or safeguards the data and biological samples.
• Who finances the research.
• Who is authorized to use the resulting resources.

In FinnGen's model:

• Biobanks serve as long-term custodians of research assets.
• Universities act as responsible research institutions.
• Pharmaceutical companies contribute funding and participate as research partners.

This structure provides a useful example for considering how public research interests and commercially oriented research and development can coexist.

6.4 Data Collection Should Not Be the Final Objective#

The third lesson is that collecting data from 500,000 individuals should not be considered the ultimate goal.

As FinnGen's current activities demonstrate, the next challenge is to enrich existing datasets with longitudinal disease information and detailed molecular measurements.

The objective is to transform those data into knowledge that can improve clinical practice and drug discovery.

The value of large-scale genomic and healthcare data infrastructure should therefore be evaluated not only by the amount of data accumulated, but also by the new biomedical knowledge and practical healthcare benefits it generates.

7. Conclusion: Where Is FinnGen Heading?#

Between its launch in 2017 and the achievement of its original participant target in 2023, FinnGen established a large-scale genomic and healthcare data resource in approximately six years.

As of 2026, the project has progressed toward using this infrastructure to investigate the biological mechanisms underlying disease.

What distinguishes FinnGen is not simply the size of its dataset.

Its defining characteristic is the integration of Finland's healthcare information infrastructure, biobanking framework, and population genetic characteristics within a collaborative research model involving pharmaceutical companies.

In this sense, FinnGen should not be viewed merely as an attempt to reproduce UK Biobank.

Instead, it is a national-scale genomic research initiative developed around Finland's distinctive institutional and scientific environment.

Nevertheless, several challenges remain important:

• Selection bias among research participants.
• Generalizability across populations.
• Limitations of healthcare registry information.
• Privacy protection and equitable data access.
• Long-term governance and sustainability.

Above all, the project's future success should be assessed by more than the number of genetic associations discovered.

The more meaningful measure will be how far those discoveries translate into reproducible insights into disease biology and tangible improvements in diagnosis, prevention, and treatment.

FinnGen's continued development provides an important case study in how large-scale genomic research can generate scientific, clinical, and societal value.

References#

[1] FinnGen, “Summary & Goals,” FinnGen official website. https://www.finngen.fi/en/summary_and_goals

[2] FinnGen, “FinnGen 3 (2023–2027),” FinnGen official website. https://www.finngen.fi/en/finngen3

[3] FinnGen, “Funding,” FinnGen official website. https://www.finngen.fi/en/funding

[4] FinnGen, “FinnGen Handbook,” FinnGen Documentation. https://docs.finngen.fi/

[5] FinnGen, “Access Results,” FinnGen official website. https://www.finngen.fi/en/access_results

[6] Finland, “Biobank Act,” 2013. Related institutional and operational information is available through the FinnGen Handbook. https://docs.finngen.fi/

[7] Kurki, M. I., et al., “FinnGen provides genetic insights from a well-phenotyped isolated population,” Nature, vol. 613, pp. 508–518, 2023. https://pmc.ncbi.nlm.nih.gov/articles/PMC9849126/

[8] Kanai, M., et al., “Population-scale immune multiome atlas reveals regulatory disease mechanisms,” Nature, 2026. https://www.nature.com/articles/s41586-026-11078-2

[9] UK Biobank, “Our History,” UK Biobank official website. https://www.ukbiobank.ac.uk/about-us/our-history/

[10] UK Biobank, Official documentation on study participants, data resources, and research access. https://www.ukbiobank.ac.uk/

[11] FinnGen, “FinnGen Handbook,” Technical and operational documentation covering data collection, genomic analysis, research access, and privacy. https://docs.finngen.fi/