Security is the number one priority of the FarGen project and safeguarding participant’s private life and trust between the parties is crucial.
Information about your genes is sensitive information, and all genetic data will therefore be encrypted and protected by anonymisation. No personal data will be made public. Your participation in FarGen is protected by anonymity and your information will only be available for research under a number, which does not indicate who you are.
The only person holding the key to the anonymity, meaning that this person has access to both names and numbers, is the clinician responsible for FarGen. In addition, some employees of the Faroese Health Authority and an IT consultant will have administrative access.
There are scenarios, of varying likelihood, in which anonymity could, in theory, be breached, e.g. if somebody violates the rules of confidentiality or hackers and thieves crack the anonymity. FarGen complies with procedures that govern how to handle, transfer and store data securely in accordance with Faroese statutory data security requirements.
FarGen also meets the customary standards of anonymity and data security when collecting samples for the Faroese Health Authority’s Registry of Tissue.
If a research project is launched that needs your data, your consent will be required in order for that project to access your data. Such a research project must always be authorised by the Research Ethics Council, the Faroese Health Authority and follow the regulations of the Faroese Data Protection Agency before it can start, and access will only be granted to anonymised data.
Read more about research projects.