FAQs

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 and municipality/country of birth).  

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 information about your family that you yourself have provided in the questionnaires you have completed. These questions include the home language of your parents and grandparents, your mother’s and father’s ethnic background, your parents’ and grandparents’ affiliation with religious communities and primary industries, your household’s gross income, the family’s financial situation, and other familial circumstances during your upbringing, as well as familial conditions today (cohesion, loyalty).

Questions have been asked about whether your mother, father, child(ren), or sibling(s) have had various health conditions, whether your parents smoked at home, about family cohesion, parental supervision of tooth brushing, and whether family members have acted as interpreters at the general practitioner or in hospitals.

There are also questions about whether your parents lived in boarding schools during elementary school, whether your parents or grandparents were forcibly evacuated during World War II, whether they remained in Nord-Troms or Finnmark during the forced evacuation, and how events during the war have affected the family afterward. Questions have been asked about whether there is strong cohesion in the family, whether the family has a positive outlook on the future, and whether they are loyal to one another. Among the questions about violence and abuse, it is asked whether violence and abuse have been perpetrated by family members. For women, there are also questions about the number of children they have given birth to and breastfeeding.

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.  

Your data is stored in EUTRO, a database specifically designed to ensure the secure storage of data from population surveys at UiT The Arctic University of Norway, in accordance with the requirements of the Norwegian Data Protection Authority (Datatilsynet). Only a few authorized staff members have access to SAMINOR’s research data, biological samples, and information about which research projects are using the data. Your data is stored in EUTRO without directly identifiable information, such as your name or personal identification number. To ensure the highest level of security, EUTRO is hosted within the Services for Sensitive Data (TSD) at the University of Oslo. TSD is a specialized solution for the secure storage and analysis of health data and other sensitive data, functioning as an additional firewall around EUTRO.

The information that can link your data to you (using your personal identification number) is called a "linking key." This key is stored in a separate area within TSD with strict access restrictions. A specific password is required to open this file, and only a few individuals know this password. Everyone with access to research data and information about participants is bound by confidentiality.

Audio recordings from qualitative interviews are stored on a secure server within the Services for Sensitive Data (TSD) at the University of Oslo.

The biological samples are stored in an approved research biobank at the Department of Community Medicine, UiT The Arctic University of Norway. The leader of SAMINOR is responsible for the biobank, which is registered in the Norwegian Institute of Public Health’s Biobank Registry under biobank number 4651. The biological material can only be used after approval from the Regional Committees for Medical and Health Research Ethics (REK).

Data provided to researchers is always minimized, meaning that researchers receive only the minimum amount of information necessary to answer their research questions. Data provided to researchers is either de-identified or anonymized. De-identified means that the dataset does not contain names, birth dates, or personal identification numbers, so your information cannot be directly linked to you as an individual. Anonymization involves removing the possibility of identifying individuals in a dataset so that it is not possible to trace the information back to the person it originates from (reverse identification), either through a code list or by the information itself revealing the person. To achieve this, the number of variables (pieces of information) is reduced to an absolute minimum, extreme values are removed, and information is made less detailed—for example, by grouping ages into age groups or combining five response categories into two. In an anonymized dataset, it will not be possible to recognize any individual.

External parties, such as employers, police, insurance companies, and similar entities, will never gain access to the information, biological samples, or clinical examinations about you that are stored with 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
• SAMINOR 3

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 can notify us that you are withdrawing your consent. You may also request the deletion of collected samples and data, unless the information has already been included in analyses or used in scientific publications. 

Withdrawal of consent must be done in writing. You can withdraw your consent by sending us an email at saminor@uit.no or a letter to the Centre for Sami Health Research, UiT The Arctic University of Norway, Postboks 6050 Langnes, 9037 Tromsø.