Privacy and consent
As a participant in SAMINOR, you can be assured that the information collected about you is handled in accordance with applicable laws, regulations, and guidelines. The information collected will only be used for approved research purposes. It will not be possible to identify you when results from SAMINOR are published.
To safeguard your rights under the Health Research Act, Regulations relating to population-based health surveys, and data protection legislation, it is important that you know what personal data SAMINOR processes and how it is handled.
Privacy and Your Consent
Participation in SAMINOR is voluntary. You can participate even if you do not wish to take part in all parts of the survey. By participating in SAMINOR, you consent to your information and biological samples being used for research for an indefinite period. The consent remains valid until you choose to withdraw it. You also consent to potentially being invited to new or additional studies if relevant.
You may withdraw your consent at any time. If you withdraw, research on your data and biological material will cease. You may then request that your biological material be destroyed and your health information deleted or provided to you within 30 days. However, this does not apply if the information has already been anonymized or included in analyses, or if the biological material has been processed and is part of another product. If you wish to access the information SAMINOR has stored about you or if you wish to withdraw your consent, you can contact us via email at: saminor@uit.no.
For those who participated in qualitative interviews: Data from qualitative interviews in SAMINOR 3 will be anonymized in 2027. Once the interviews are anonymized, it will no longer be possible to trace back who said what, nor will it be possible to withdraw from the interview study.
Analyses of the biological samples are securely stored in a database along with your questionnaire responses and clinical measurements. Remaining blood samples are stored in a biobank at UiT The Arctic University of Norway for future use in research.
SAMINOR has its own guidelines for safeguarding data and biological material from participants in the best possible way and is committed to maintaining high ethical standards in its research.
All information and samples are stored without names or personal identification numbers. A code links you to your information and samples. The key to this code is stored separately from your health information, and only a limited number of individuals have access to the code key that can connect your information to you.
When researchers are granted access to data, all personally identifiable features are removed and replaced with a random ID number (de-identification), ensuring that researchers do not know the identity of the participants. See the requirements for accessing SAMINOR data under "How to Apply for Data or Biological Material from SAMINOR."
SAMINOR 3 is conducted by the Centre for Sami Health Research, which manages the data from the survey. The data controller for SAMINOR is UiT The Arctic University of Norway. This means that the university has the overall responsibility for how the information is stored and made accessible.
- The Data Protection Officer at UiT The Arctic University of Norway can be contacted at personvernombud@uit.no.
- The research lead is SAMINOR’s director, Senior Researcher (Dr. Med.) Ann Ragnhild Broderstad.
- If you believe that information or biological samples are not being handled in accordance with data protection and health legislation, you may contact the Norwegian Data Protection Authority (Datatilsynet) or the Norwegian Board of Health Supervision (Statens helsetilsyn).
SAMINOR is led by a steering committee composed of representatives from the Sami Parliament, Northern Norway Regional Health Authority, Troms and Finnmark County Council, KS (The Norwegian Association of Local and Regional Authorities), the Southern Sami Health Network, an employee representative from the Centre for Sami Health Research, and an external researcher. The head of the Department of Community Medicine chairs the steering committee, and SAMINOR’s academic director serves as the secretary.
What Information is Stored in SAMINOR?
The information registered about participants is based on questionnaire responses, measurements from physical examinations, and analyses of biological samples.
If you have participated in SAMINOR, we have:
- Information about you from the questionnaires you have completed
- Results from clinical examinations (e.g., height, weight, and blood pressure)
- Results from analyses of biological samples (e.g., urine, blood, and hair samples)
- Information from the Norwegian Tax Administration about your gender, year of birth, and municipality of residence (in SAMINOR 1, also marital status and municipality/country of birth)
Analyses of the samples are stored in a database along with your questionnaire responses. Remaining blood and hair samples are stored in a biobank at UiT The Arctic University of Norway for future use in research.
Starting with SAMINOR 3, SAMINOR also collects information through interviews. What you, as an interview participant, have said in these interviews will be stored, but your identity will remain hidden.
The Questionnaire Covers a Range of Topics Related to Your Health, Illnesses, and Lifestyle Diseases
- Various illnesses
- Cardiovascular disease and diabetes
- COVID-19
- Medication use
- Physical ailments
- Dental and oral health
- Use of alternative medicine/traditional healers
- Discrimination and harassment
- Violence and abuse
- Disabilities
- Use of and satisfaction with healthcare and social services
- How historical events affect you today
- Negative life events
- Diet
- Quality of life
- Sleep problems
- Mental health
- How climate and environmental changes affect you
- Work/education/economy
- Use of social services and welfare benefits
- Substance use
- Social support and coping
- Sexual orientation
- Physical activity
- Religion
- Language, ethnicity, and culture
- Pregnancy, children, menstruation, and menopause
Physical Examination:
- Measurement of height, weight, waist, and hip circumference
- Measurement of heart rhythm (ECG)
- Measurement of blood pressure and resting pulse
- Measurement of grip strength
- Measurement of lung capacity (spirometry) for selected participants
- Some participants are asked to wear an activity tracker for one week
- Collection of blood and hair samples
- Participants are asked to provide a urine sample
Participants over the age of 70 are invited to an additional examination lasting approximately 30 minutes, which includes:
- Balance tests and simple functional tests, such as sitting down and standing up
- Memory and concentration tests, where participants recognize words, animals, and match symbols with numbers
Analysis of Blood and Urine Samples:
- Blood sugar levels
- Levels of lipids (fats) in the blood
- Hemoglobin levels and iron stores
- Levels of various enzymes (proteins)
- Levels of selected hormones
- Levels of selected salts and minerals
- Markers of inflammation in the body
- Various indicators of kidney function
- Antibodies against COVID-19 for a selection of participants
- Vitamin B12
Who Can Use Data and Biological Material from SAMINOR?
To access SAMINOR material, research projects must apply for permission from SAMINOR. Data from SAMINOR can be used in research projects to increase knowledge about health, diseases, and living conditions in populations residing in multiethnic areas in the north. Research projects using data or biological material from SAMINOR must demonstrate a clear benefit for the population in the studied areas.
Anyone with research qualifications (a PhD or equivalent) and affiliated with a Norwegian research institution can apply for access to analyze SAMINOR data. Students may gain access to use SAMINOR data if their primary supervisor is the project leader and submits the application. Police, insurance companies, or employers will not be granted access to the data.
Researchers will only be given the information necessary to answer their specific research questions. Researchers are granted access only to data without directly identifiable personal information. This means that directly recognizable information about you has been removed. Once researchers have completed their analyses, they are required to delete the data they have been provided. For all use of biological material, any remaining sample material must either be destroyed or returned to SAMINOR.
All research projects that wish to use data or biological material from SAMINOR must comply with Norwegian laws and regulations and obtain the necessary approvals before data or biological material is released.
All health research involving Sami as a group, collecting data from areas where Sami constitute a significant proportion of the population, or addressing Sami ethnicity, language, or culture requires collective Sami consent. Such consent must be obtained from the Ethical Committee for Sami Health Research for all projects using information from SAMINOR.
In some research projects, samples and de-identified data may be shared with researchers in other countries (including outside the EU/EEA). This will be done in such a way that our international collaborators cannot link the information to you as an individual. The project leader must be employed at a Norwegian research institution, and the conditions of the General Data Protection Regulation (GDPR) must be met.
It may also be necessary to analyze biological samples at laboratories abroad (including outside the EU/EEA). Information about transfers to recipients outside the EU/EEA will be updated on saminor.no.
Data from SAMINOR may be combined with (linked to) information about you from other registers. Researchers who wish to link SAMINOR data to other registers must obtain approval in accordance with applicable Norwegian law before such linkages can be carried out. Projects are only permitted to link specific information when the purpose of the research project aligns with SAMINOR’s overarching objectives, as outlined in the Health Register Act § 19 a. This may include national registers on diseases, income, social security, education, occupation, diagnosis registers at hospitals, or information from other health surveys in which you have participated.
Some relevant registers include:
- The Cancer Registry
- The Cause of Death Registry
- The Cardiovascular Disease Registry
- Infection Registries
- The Norwegian Prescription Database (formerly the Prescription Registry)
- The Medical Birth Registry
- The Norwegian Patient Registry
- The KUHR Database (Control and Payment of Health Reimbursements)
- The Social Security Register (FD-Trygd)
- Other registers from NAV
- Registers from Statistics Norway on population, family, social security information, education, and more
- Historical registers, other national registers, and censuses
Linkage to other registers is made possible using the 11-digit personal identification number assigned to all residents of Norway. This will be done in such a way that researchers will not have access to your identity. The linkage to registers is protected through a code key that is stored separately.
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.