When you participate in the FarGen project your genome will be read and digitalised. The information will be stored as data in a database held by the Genetic Biobank. Data storage is arranged in coordination with the National Hospital of the Faroe Islands.
Data will only be processed globally, meaning that there will be no examination of each individual’s information. This also means that nothing can be said about your concrete inherited characteristics.
Your participation is strictly confidential and information about you is only available under a number that does not reveal who you are. The only person holding the key to the anonymity, meaning access to both name and number is the person with the clinical responsibility (Responsible Clinician) for FarGen. In addition, the director of the Genetic Biobank and an IT consultant will have administrative access. Research projects may apply to access the data, but they will only access anonymised and encrypted data and researchers will therefore not know who owns the data and samples they are working on.
The only persons with access to data in the database are staff at the Genetic Biobank and researchers working on authorised research projects. They only have access to anonymised data.
Nobody will be granted access to your data without your consent, because the Genetic Biobank must on each separate occasion obtain your consent to your data being used for a research project. Your data will therefore only be available for the projects you wish to take part in, and only anonymously.
For further information, please refer to the legal basis that applies to the FarGen project.
During the first phase, the data will be used to develop the Genetic Biobank’s infrastructure, which will open up to a host of research possibilities. A portion of the data will be used to generate a Faroese reference genome, which will show the average genetic composition of the Faroese people.
The data may later – with your consent – be used for research purposes such as:
Increasing knowledge about medical conditions
Improving the capacity to diagnose medical conditions
Developing new treatment methods
Tailoring treatments to individual patients