Privacy and consent

       

SAMINOR is academically affiliated with the Centre for Sami Health Research (CSHR), Department of Community Medicine, UiT The Arctic University of Norway.  

SAMINOR processes information that can be linked to you as a person (personal data). In order to ensure that your rights are safeguarded under the Health Research Act, the Regulations on population-based health research and the Data Protection Legislation, it is important for you to be familiar with the kinds of personal data processed by SAMINOR.  

As a participant in SAMINOR, you have agreed that your data and biological samples can be used in research. Your consent is valid until and unless you decide to withdraw it.  

Declaration of consent, invitation letters and information brochures

See a separate page for a complete list of questionnaires used in SAMINOR 1 and a complete list of questionnaires used in SAMINOR 2. 

What data is stored in SAMINOR?

The data recorded about participants are based on information from questionnaires, measurements from the health survey and analyses of blood samples.

If you have participated in SAMINOR, we have information about you from the questionnaires you have completed, as well as the results of your clinical examinations (e.g. height, weight and blood pressure) and analyses of biological samples (e.g. blood samples). We have also obtained information from the National Population Register about your gender, year of birth and municipality of residence (in SAMINOR 1 also your marital status).

From SAMINOR 3 onwards, SAMINOR will also collect information from interviews. What you have said in these interviews will be stored, but your identity will be kept anonymous.

Privacy

SAMINOR has its own guidelines for optimal security of data and biological material from participants, and is committed to maintaining high ethical standards in its research. When researchers get access to the data, all personally identifiable features are removed and replaced by a random ID number (de-identification), which means that the researchers do not know the identity of the participants.

In order to ensure your privacy, there are strict rules for how data can be used and merged with data from other sources. All projects that use data or biological material from SAMINOR comply with the Health Research Act and have been approved by the Regional Committee for Medical and Health Research Ethics (REC). Anonymous datasets, where no individuals can be identified, do not require an application to the REC.

All health research that includes Sami as a group or collects data from areas where Sami make up a significant proportion of the population, or research regarding Sami ethnicity, language or culture, requires collective Sami consent. This must be obtained from the Expert Ethics Committee for Sami Health Research appointed by the Sami Parliament. All projects that use information from SAMINOR must obtain such consent.

Insurance companies or other commercial bodies will not be permitted to access the data.

Linking data with registers

Following approval by the Norwegian Data Protection Authority and/or the REC, your SAMINOR data may be merged 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. This can be done by using the 11-digit ID number of all inhabitants of Norway. Data from different SAMINOR surveys may also be combined for those who have taken part in more than one survey. In all these cases, your name and ID number will be removed, so that researchers will not know your identity.

Right of access

Everyone who has participated in SAMINOR has the right of access to the data recorded about them. You are also entitled to correct any errors in the information we have recorded about you. If you want access to the information SAMINOR holds about you, you are welcome to contact us at saminor@uit.no.

Withdrawing consent

As a participant in SAMINOR, you can withdraw your consent at any time. 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. If you wish to withdraw your consent, please contact us at saminor@uit.no.

For participants in qualitative interviews: The data from the qualitative interviews in SAMINOR 3 will be anonymized in 2027. When the interviews have been anonymized, it will be impossible to find out who said what, and it will not be possible to withdraw from the interview study.

Data processing

The data controller is UiT The Arctic University of Norway. 

SAMINOR is academically affiliated with the Centre for Sami Health Research (CSHR), Department of Community Medicine, UiT The Arctic University of Norway. The CSHR is responsible for planning and implementation of data collection and management of the data collected. The head of the SAMINOR Study is research professor, dr.med. Ann Ragnhild Broderstad. 

SAMINOR is led by a steering group comprised of representatives from the Sami Parliament, the Northern Norway Regional Health Authority, Troms and Finnmark County Council, the Norwegian Association of Local and Regional Authorities (KS), the Southern Sami Health Network, an employee representative from CSHR, and an external researcher. The head of the Department of Community Medicine is the chair of the steering group, and the head of the SAMINOR Study is the secretary. 

Researcher access to data and biological material

All research projects that receive data from SAMINOR must comply with the relevant laws and regulations. Only persons affiliated with approved research institutions such as universities will be permitted to conduct research using data/biological material from SAMINOR. The project manager of all research projects involving SAMINOR data must have suitable research qualifications (a PhD degree or equivalent). PhD and master’s degree students are also permitted to access SAMINOR data/biological material. In such cases, the student’s main supervisor will be the project manager. All research projects are required to include at least one researcher with knowledge of Sami culture and society and preferably previous experience working with SAMINOR data.