About the Genetic Biobank

In June 2006 the Genetic Biobank (Ílegusavnið) started its efforts to develop the infrastructure to establish and maintain an active biobank, and to utilize such a resource in conjunction with medical and genealogical data to support research projects aimed at discovering the relationship between genetic background, environmental influences and disease onset and progression. The current population of the Faroe is approximately 49.000. The population these last 200 years is estimated to be approximately 180.000.

The Genetic Biobank is a governmental institution under the Ministry of Health www.hmr.fo, with a mandate to organize, develop and administer a Tissue Registry (biobank), a Diagnosis Registry and a Genealogy Registry and to process applications for permission to access and study the information contained in the said registries. A nationwide genealogy registry covering several centuries (~ 4 centuries) is available. The Genetic Biobank is the official institution authorized to conduct genetic research on human tissue from individuals registered in the Faroes. All organizations wishing to use Faroese samples and diagnostic information can do so by entering a contractual research agreement with the Genetic Biobank. The first pilot projects and preparatory projects started in the autum 2007.

In connection with each specific project the Genetic Biobank will appoint a responsible clinician within the National Health Care system, with the right, according to law, to obtain all relevant personal data and diagnoses from all branches within the National Health Care System (diagnostic data available over the last 100 years), including the National Pharmacy (extensive register over prescribed drugs, stored electronically since the early eighties), GP’s (out-patient records) and specialist records (both out-patient and hospitalised). The informatics infrastructure in the Healthcare Care System (GP’s and Hospitals), employing electronic registration since the early 1990’s, have these last years been implementing the COSMIC platform and are now in the forefront using electronic patient system. In addition to collecting fresh tissue samples from subjects enrolled in specific projects, there are archival tissues available from an estimated 35,000 Faroese in the form of Guthrie cards and samples in paraffin blocks from an estimated 30,000 people and 20.000 EDTA Cryo-samples.