Informed consent of study participants is a necessary element in scientific research. It is obligatory to provide the participants with certain information about their rights regarding personal data protection, such as which data and health information is permanently stored in the health data collection.

A strong emphasis is placed on ensuring the data protection of those involved in scientific research in the health field in Iceland. A special chapter in the application to the ethics committees covers personal protection, the collection and handling of sensitive information. Due to the small size of the population, more requirements are made in this matter in Iceland than in other countries where there is less risk of identifying individuals due to the larger population.

The Act no. 90/2018 on the Data Protection Act contains provisions that investigators must follow and participants and investigators are encouraged to familiarize themselves with the laws and regulations on personal data protection which you can read more about on personuvernd.is.