FAQs

Here you will find answers to frequently asked questions about SAMINOR. If you cannot find your question, please contact us by e-mail at saminor@uit.no.

Om SAMINOR

SAMINOR is a large population-based study on health and living conditions in regions with Sami and Norwegian populations in northern and central Norway. Population-based means that all or a random sample of the population in certain age groups are invited to participate. The aim of SAMINOR is to enhance knowledge about health and living conditions of Sami and northern Norwegians who live in traditional Sami areas. Most municipalities included in SAMINOR are rural, with a relatively small number of inhabitants.

SAMINOR has a health register for research, which contains personal information (including health information and information about participants’ linguistic and ethnic background). Information is collected via questionnaires, clinical examinations and analysis of blood samples. In addition, data are collected through qualitative interviews.

SAMINOR also has a biobank with biological material (blood samples) from participants.

The information collected in SAMINOR is used for research on health and living conditions. Participants also receive information on their own health in the form of selected test results.

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 (SAMINOR 1-SAMINOR 3).  

The head of SAMINOR 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.

UiT The Arctic University of Norway is data controller.

So far, two surveys of health and living conditions have been conducted: SAMINOR 1 from 2003 to 2004, and SAMINOR 2 from 2012 to 2014. SAMINOR 2 consisted of two separate surveys: a questionnaire survey in 2012 and a health survey including a new questionnaire in 2012-2014.

The third collection of data on health and living conditions (SAMINOR 3) is planned for 2023-2025. Before this, a qualitative interview study will be conducted to explore what the local people themselves think is relevant to a survey of health and living conditions, and what they think such a survey in their area should focus on. The interviews are now taking place and are expected to be completed in summer 2022. 

All inhabitants in certain age groups, in selected municipalities or parts of a municipality in northern and central Norway, will be invited to participate in SAMINOR 3. Unfortunately, you cannot sign up to take part in SAMINOR, but we hope you will be willing to participate if you receive an invitation from us.

An invitation will come in the form of a letter sent by post, or as a text message or e-mail. It will contain information about the research project and what your participation will involve.

You can contact us by:

sending an email to saminor@uit.no
sending a letter to:
Centre for Sami Health Research
Department of Community Medicine
UiT The Arctic University of Norway
Postboks 6050 Langnes
9037 Tromsø

Privacy

If you have participated in SAMINOR, we have information about you from the questionnaire(s) you completed, as well as the results of your clinical examinations (e.g. height, weight and blood pressure) and biological samples (e.g. from blood tests). 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). 

Here you can find all the SAMINOR 1 questionnaires and all the SAMINOR 2 questionnaires. 

SAMINOR also collects information via interviews. What you have said in these interviews will be stored, but it will be anonymized, which will make it impossible to identify you. 

SAMINOR only has the information about your family that you have provided in the questionnaires. These questions were about the language your parents and grandparents speak/spoke at home, your mother’s and father’s ethnicity, your parents’ and grandparents’ participation in religious communities, your household’s gross income and your family’s finances during your childhood. Further questions were whether your mother, father, child(ren) or sibling(s) had various health problems, whether your parents smoked at home, whether there was good family bonding, whether your parents made sure you brushed your teeth, and whether your family members had acted as interpreters for visits to the doctor or hospital. Women were also asked about the number of children they have had and about breastfeeding. Questions about violence and abuse included whether violence and abuse were committed by family members.

Here you can find all the SAMINOR 1 questionnaires and all the SAMINOR 2 questionnaires. 

We cannot identify your family members from the information you have given to SAMINOR. 

All ethnic groups have the right to know about their health situation. The main purpose of SAMINOR is to increase knowledge about the health and living conditions of the Sami in Norway, but also of other groups living in the same areas. We want to find out whether there are differences in health between different ethnic groups.

Since ethnicity is not recorded in any national registers, only participants themselves can tell us whether they have Sami ethnicity or not. There are also many people with a Kven/Finnish background living in northern Norway. We know very little about the health situation of the Kven population. Therefore, SAMINOR also asks about Kven ethnicity. It is also possible to answer “Norwegian” or provide information about other ethnicities under “Other”.

The questions are: 

What language(s) do/did you, your parents and your grandparents speak at home? (seven separate questions)
What ethnic backgrounds do you, your father and your mother have? (three separate questions)
What do you consider yourself to be?

For all questions, respondents can tick more than one of the alternatives Norwegian, Sami, Kven and Other. 

All information and biological material from SAMINOR is stored at UiT The Arctic University of Norway, subject to strict conditions for storage and access. Information that identifies participants, such as name and national ID number, is stored separately from other data in a secure area of the UiT data system or at Statistics Norway. Audio recordings from qualitative interviews will be stored in a secure server at the Services for Sensitive Data of the University of Oslo. Only a few authorized employees, under strict confidentiality rules, have access to the data system where ID numbers are stored.

Data provided to researchers are always minimized in that the researchers receive no more information than necessary to enable them to answer their research question. The data researchers can access are generally de-identified or anonymous. De-identified means that the dataset contains no names, dates of birth or ID numbers, and your information can therefore not be linked directly to you. Anonymous means that the dataset contains aggregated data, which means that a variable such as age is divided into age groups. In an anonymous dataset, it will not be possible to identify any individual person.

External parties, such as employers, the police and insurance companies, will never be given access to your data, biological samples or clinical examinations stored in SAMINOR.

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 the email address saminor@uit.no.

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

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. You can find an information brochure and consent letter from the different surveys here: SAMINOR 1, SAMINOR 2, the Questionnaire Survey, SAMINOR 2, the Clinical Survey. In this way, you can see what you consented to and the information you received when you participated.

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 have any questions or wish to withdraw your consent, please contact us by email at: saminor@uit.no. Consent may only be withdrawn in writing. You can withdraw your consent by sending us an email to saminor@uit.no or a letter to the Centre for Sami Health Research, UiT The Arctic University of Norway, Postboks 6050 Langnes, 9037 Tromsø.

Information on this is coming. 

Research in SAMINOR

The overall goal of SAMINOR is to enhance knowledge of the health and living conditions of the inhabitants of multi-ethnic areas regions in the north of Norway, with a particular focus on the Sami population. SAMINOR covers many areas of research and can be divided into three main areas:  

Physical health 
Mental health 
Public health services

Some examples of research topics are diabetes, cardiovascular disease, chronic pain, dental health, levels of iron, vitamins and environmental toxins in the blood, overweight and obesity, diet, physical activity, suicidal behaviour, alcohol and drugs, mental disorders, discrimination, violence and abuse, and primary and specialist healthcare services. 

Ongoing research projects

Completed research projects

Publications containing data from SAMINOR 

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 for their research. 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. 

Most researchers who use SAMINOR work at the Centre for Sami Health Research at UiT The Arctic University of Norway. We also work closely and extensively with many other researchers, regionally, nationally and internationally. SAMINOR has formed the basis for several scientific publications, reports, popular science texts, and master’s and PhD degrees. Lists of ongoing and completed research projects and all publications are available on the SAMINOR website.

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.  

SAMINOR has increased our knowledge of the health of the Sami and northern Norwegians.

Here are some results:

Participants in SAMINOR are generally in good health and have good living conditions. 
A slightly higher proportion of Sami and Kven participants report poor or not very good health, as compared to others living in the same areas. 
Sami have a slightly higher risk of stroke. For other cardiovascular diseases, the risk is about the same for Sami as for non-Sami living in the same areas. 
The prevalence of diabetes is high regardless of ethnicity but varies between regions. 
Chronic abdominal pain/problems after consuming milk are most common among Sami but are also observed among Kvens.  
People who speak Sami at home are less satisfied with primary healthcare services. 
A large proportion of Sami report having been subjected to discrimination and bullying. Kvens also experience more bullying and ethnic discrimination than Norwegians, but less than Sami. Ethnic origin is reported to be the most common reason for discrimination. 
A large proportion of women report emotional, physical, or sexual violence, and the proportion is highest for Sami women. Many Sami men also report having been subjected to violence. 
Childhood violence increases the risk of mental health problems and chronic pain in adulthood. 
Anxiety and depression are slightly more frequent in Sami than others living in the same areas. 
From SAMINOR 1 to SAMINOR 2 the proportion of daily smokers halved, and cholesterol and blood pressure decreased in both women and men. 
Women have a higher level of education than men. Sami and Kven women have the same levels of education as Norwegian women, or slightly higher. 
Iron deficiency is less prevalent in Sami than in the Norwegian population, which can be attributed to an iron-rich diet.

Genetic analysis

In genetic analysis, information from the DNA or parts of it is used to examine the risk of disease or hereditary factors. Here it is important to mention that for most diseases and conditions, risk is determined by the interplay between genetic (hereditary) factors and the person’s environment and lifestyle. Only a few conditions or diseases are caused by the DNA alone, examples being trisomy and haemophilia.

SAMINOR has not yet conducted any genetic analyses. There are two reasons for this. 1) Until 2019, there were no ethical guidelines for research on biological material in a Sami population. 2) There is still considerable scepticism about research on genetic material due to previous unethical research projects on the Sami and Kvens.  

Close collaboration between the Sami Parliament and health researchers has now resulted in Ethical Guidelines for Sami Health Research and Research on Sami Biological Material, which provide advice on how to design good research projects. These guidelines will be of great use for new research projects that include genetic analyses.

SAMINOR has a biobank where DNA can be extracted. Genetic analysis may be used in the future to examine genetic markers for disease. Such research will only be conducted if it is important and useful to the Sami population. Genetic material from SAMINOR will not be used to determine kinship or investigate the origins of the Sami, and will not be shared with the police, insurance companies or other external parties. It will not be possible to identify individual participants based on genetic analysis in SAMINOR. 

It is also important to mention that genetic research will never start until ethical assessments have been conducted and approved by the Expert Ethics Committee for Sami Health Research, the Regional Committee for Medical and Health Research Ethics (REC), and by the manager of SAMINOR on the advice of the SAMINOR Project Board. 

By agreeing that your blood samples can be stored in biobanks and used in future health research, you have also given permission for genetic research on the samples. Everyone who has given blood samples in SAMINOR 1 and SAMINOR 2, Stage 2 (Clinical Survey) to be stored in our biobank has consented to genetic analysis. You can read the information given to participants here: Information brochure, SAMINOR 1, Information brochure, SAMINOR 2, the clinical survey. 

At present, it is not possible to provide information on genetic risk of diseases to participants in SAMINOR.  