YOUR RIGHTS - SVALBARD

Voluntariness and Consent

Participation in the survey is voluntary and based on written informed consent. Your contact information from the Norwegian Tax Administration will be deleted within six months after data collection. We process your information for research in the public interest. Consent is obtained under the Health Research Act to ensure your right to self-determination. If you agree to participate in the study, we will ask you to sign the consent form at the start of the survey.

If you choose to participate, you can withdraw at any time without providing a reason and without incurring any consequences. Until publication, you can request that your data and test results be deleted.

Brief Overview of Data Privacy

We will only use your information for the purposes described here. We process personal data confidentially (strictly confidentially) and by data protection regulations.

Your information will be pseudonymized with a unique identification number. No information will be labeled with your name, date of birth, or personal identification number; instead, it will be marked with a unique number on samples, questionnaires, and registers. Information, including a separate participant list with names, personal identification numbers, and contact details, will be electronically stored in the Service for Sensitive Data (TSD) and managed by UiT, with restricted and monitored access. Paper forms will be securely archived at UiT.

Information About Third Parties

In addition to your own and your child’s information, a few details about third parties will be registered. These third parties will be family members of the participants. In the questionnaire, you will provide information about your parents' birth region, your mother's year of birth, and details about previously born children (birth year, weight, length).

Your Rights Regarding Access, Changes, or Deletion

Your information will only be used for research as described in the information sheet. You have the right to access the information registered about you and to correct any errors in the recorded data. The information will be provided within 30 days. You can also request that your data in the project be deleted and that biological material be destroyed. The right to request destruction, deletion, or access does not apply if the data or sample material has been anonymized. It may also be limited if the data has been included in completed analyses or if the sample material has been processed and is part of another biological product. You can object to the processing of your data unless it is necessary to achieve the research purpose.

Access to Your Data

Your data will be used for research and made available to researchers upon application to the MISA survey, approval by the Regional Committee for Medical and Health Research Ethics (REK), and evaluation by Sikt. Access to your data is restricted to the MISA project group at UiT and associated students (researchers, PhD, and master’s students). Data may also be shared with key external MISA partners or external researchers associated with ArcSolution. Data sharing with external collaborators is secured through specific data transfer agreements. Data provided to researchers is limited to what is necessary to address the research question. Results will be presented in a way that ensures no information can be traced back to you as an individual.

National partners for chemical analyses include the Environmental Toxicology Laboratory at the University Hospital of Northern Norway (UNN), which serves as MISA's main laboratory. In connection with ArcSolution, environmental toxins are planned to be analyzed at the Norwegian University of Life Sciences (NMBU) and Aarhus University in Denmark.

Contact for Questions About Data Privacy and Complaints

If you have questions about data privacy in the project, you can contact:
Data Protection Officer at UiT via email: personvernombudet@uit.no

If you have questions related to Sikt’s evaluation of the project, you can contact:
Email: personverntjenester@sikt.no
Phone: +47 73 98 40 40

As a participant in our research project, you also have the right to file a complaint with the Norwegian Data Protection Authority if you believe that data protection regulations are not being followed.

Results

You will not automatically receive results from your samples, but project updates will be available on our website. If you wish, you will receive a newsletter by mail approximately every 3 to 5 years. Please note that you have the right to access stored information, including test results—see your rights. The results of the survey will be published in international and national scientific journals, reports, dissertations, and through popular science channels and media.

Approvals

The survey has been approved by the Regional Committee for Medical and Health Research Ethics (REK Nord). If it becomes relevant to use the samples for purposes other than those outlined in the information sheet, this will only occur after a new evaluation by REK. The Knowledge Sector Service Provider (Sikt) has assessed that the processing of personal data complies with data protection regulations.

Project End

The project is set to conclude in 2033. After this, the key linking participants to their data will be deleted, but anonymized material may still be used for further research.

Responsible for the Survey

UiT The Arctic University of Norway, represented by the Managing Director, is responsible for the personal data processed in the project.

Collaborators

The EU project ArcSolution is a key partner for matters related to environmental toxins and funds data collection and chemical analyses.

Other partners in the MISA survey include researchers affiliated with the University Hospital of Northern Norway (UNN), the Institute of Marine Research, the University of the Faroe Islands, and the University of Surrey in England. Researchers at these institutions act as co-authors and provide expert assistance but will not have access to data files, except for specific researchers associated with the Environmental Toxicology Laboratory at UNN and the University of the Faroe Islands.