What happens to my samples and the information about me?
- All use of blood samples requires approval by REC North (Regional Committee for Medical and Health Research Ethics). Blood samples are stored in a research biobank at UiT The Arctic University of Norway.
- Samples taken from you and information recorded about you will only be used as described in the purpose of the study. The further processing of health data or samples will comply with the Norwegian Health Research Act and any other applicable legislation.
- All information and samples will be processed without name and ID number or other personally identifiable information. A code will link you to your personal data and samples via a list of names. This means that the information is de-identified. Furthermore, it will be impossible to identify you in the results of the study when these are published.
- Only a very limited number of authorised personnel associated with the project have access to the list of names and could therefore identify you.
- We may contact you later with an invitation to complete an additional questionnaire.
In order to ensure your privacy, there are strict rules for how data can be compared and used, and permission/approval is required from the REK for each project. When researchers access the data, all personally identifiable features are removed and replaced by a random serial number (de-identification), which means that the researchers do not know the identity of the participants.
Right of Access
If you have participated in the study, you have the right of access to the data recorded about you. You are also entitled to correct any errors in the information we have recorded.
Withdrawal from the Study
If you wish to withdraw from the study, you are entitled to have all personal samples and data removed, unless the information has already been used in an analysis or a scientific publication.
Linking Data with Health Registers
The data recorded about you is based on information from the questionnaire, measurements from your examination and blood tests. Following approval by the Norwegian Data Protection Authority and/or the REK, your SAMINOR data may be combined with data about you in other registers for the purpose of research. This additional data may include social security, illness, income, education, employment or information from other health surveys you have participated in. Possible registers are the Cancer Register, the Cause of Death Register, the National Population Register, the National Prescription Database, the Medical Birth Register, the Cardiovascular Disease Register, other national records of the diseases researched in SAMINOR, records in Statistics Norway and censuses. In all these cases, your name and ID number will be removed. Insurance companies or other commercial bodies will not be permitted to access the data. Data from SAMINOR 1 and SAMINOR 2 may also be linked.
Feedback to Municipalities
Some results from the surveys are shared with the municipalities in the form of reports on their own data. These results can lead to promotion and prevention measures in public health and welfare in Northern Norway. The surveys will therefore enhance public health in the region. The SAMINOR Study can thus be a useful contribution to meeting the requirements of the Norwegian Public Health Act. The results, however, depend on the level of participation; the more people who participate, the more accurate will be the picture of public health in a particular municipality.