Announcing a Partnership between Variant Bio and the Genetic Biobank of the Faroe Islands/University of Copenhagen
FarGen, or the Faroe Genome Project, is a project managed by Ílegusavnið, the Genetic Biobank of the Faroe Islands, which is an institute under the Ministry of Health of the Faroe Islands (located between Iceland and the UK’s Shetland Islands). The goal of FarGen is to create a genetic reference panel that represents the Faroese people. This is one of the steps that the Faroese government is undertaking towards advancing precision medicine on the islands.
FarGen started with “Phase 1” that recruited ~700 participants from across the islands and focused on assessing the feasibility of the ambitious undertaking and on understanding attitudes towards the project. Overall, it was extremely well received by the Faroese population, predominantly because FarGen is local, run by an impressive team of Faroese geneticists, and the project is focused on questions and issues that the general public there finds relevant.
The Genetic Biobank is now partnering with Variant Bio to expand this ambitious project by recruiting an additional 3,500 participants, which constitutes about 7% of the population of the Faroe Islands. The project has three goals:
1. Build a Faroese genetic reference panel, which will uncover genetic variation present in the Faroese population and will become the reference for all future precision medicine efforts on the Islands;
2. Explore the genetic architecture of autoimmune and metabolic disorders on the Islands — specifically type 2 diabetes, hypertension, ankylosing spondylitis, and inflammatory bowel disease;
3. Study the evolutionary history of the Faroese people, to understand how the islands were settled, where the migrants came from, and identify evidence of natural selection in the genome.
The Faroe Islands are an ideal place to conduct genetic research. It’s a small country, which is illustrated well by a few facts — no point in the Faroe Islands is further than 5km (3 miles) from the sea and there are a total of five traffic lights across the Islands. The Faroes were settled by a small number of people of Scandinavian and Celtic descent in the 9th or 10th century AD.¹,² There was little immigration to the islands for centuries after, and the population size remained stable until it rapidly expanded in the 1700s, reaching the current size of ~50,000.³ This history has resulted in a high degree of relatedness among present-day Faroese individuals. In fact, a large fraction of the population can trace their ancestry back to one man, Clemen Laugesen Follerup, a priest from Denmark, who is thought to have fathered 23 children in the mid to late 17th century.⁴ He had 66 grandchildren in 27 different villages, which we know thanks to the immaculate genealogical records available for the Faroese population. These records were collected by the local churches and over time amounted to 4.5 kilometers (2.8 mi) of shelved materials.⁵ They are now digitized, organized in the Genealogical Registry, and managed by the Genetic Biobank, and are very helpful for contextualizing genetic analyses.
When Variant Bio first reached out via email to Dr. Noomi Gregersen, the General Manager of the FarGen project, she suggested a meeting, and I visited the Genetic Biobank soon after. I met Noomi’s sheep, the natural lawn mowers seen everywhere in the Faroes, which are more abundant in population than the Faroese. Over coffee and Föroya Bjór, the local beer, we designed a scaffold for our project. The final design addresses major health concerns for the Faroese with the goal of developing findings that can translate into novel public health measures.
The combination of a historic founder event, continued isolation, and recent population expansion has resulted in unique patterns of genetic variation that may contribute to some of the unusual disease epidemiology seen on the islands. For example, the increased prevalence of cystic fibrosis, carnitine transporter deficiency, autoimmune disorders, and multiple sclerosis, among others. We jointly believe that there are likely high-effect variants that were kept at low frequency in mainland Europe due to negative selection but rose to high frequencies among the Faroese. This could have happened through genetic drift or selection through adaptation to a specific environment and diet. Therefore, it is possible that rare genetic variants with large effect on health-related traits may be more easily detectable in the Faroese, even with much smaller sample sizes than in European studies.
I learned about FarGen for the first time from Dr. Fernando Racimo, a friend and former colleague who is an associate professor at the GLOBE Institute at the University of Copenhagen and has extensively worked with Viking genomes, focusing his research on human adaptation. Dr Racimo and his team are now collaborators on the project and will focus on the evolutionary history aspects of the data analysis. His lab has committed to training Faroese bioinformatics students to ensure that the Genetic Biobank has the capacity to perform state-of-the-art data analysis internally. This has been enabled by Variant Bio’s Benefit Sharing Program, which for this collaboration is entirely focused on supporting a variety of local Faroese capacity-building initiatives related to sequencing technologies, data storage infrastructure setup, and genetic data analysis.
In the Faroes you can find the Prime Minister’s phone number in the phone book. A country this open expects openness in return. Variant Bio and the Genetic Biobank prepared a series of materials to explain all aspects of this collaboration to the participants involved. We have also built a system that ensures the Faroese Genetic Biobank maintains full oversight and custodianship of all data from the expanded FarGen project. We hope to test out this innovative solution as the project advances and implement it going forward for other collaborations.
Furthermore, we hope that this ambitious collaboration will enable personalized medicine and potentially lead to new treatments for diseases that are relevant for the Faroese people and globally.
References
- https://link.springer.com/article/10.1007%2Fs00439-004-1117-7
- https://www.nature.com/articles/s41586-020-2688-8
- https://hagstova.fo/fo
- https://www.faroeislands.fo/the-big-picture/news/faroese-genes-good-for-genetic-research/
- https://en.wikipedia.org/wiki/National_Archives_of_the_Faroe_Islands
- https://www.faroeislands.fo/nature-environment/fauna-flora-vegetation/the-sheep-islands/
