Note on ethics and personal data protection for DIGSSCORE-panels
This is a note to aid those that need information on IRB approval or similar for publishing in scientific journals.
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The panels at DIGSSCORE deals with human subjects and follows the EU General Data Protection Regulation (GDPR). According to this, we have conducted Data Protection Impact Assessments (DPIA), which is approved by the University of Bergen. The DPIAs was conducted in cooperation with what is now named Sikt – Norwegian Agency for Shared Services in Education and Research. (This site specifically for the Norwegian Citizen Panel.)
In addition, the Scientific Committee for each panel reviews all questions that are to be fielded, reviewing based on ethical issues, scientific issues, and on how the questions will impact the respondent.
A separate IRB approval is not necessary in Norway, but the data from DIGSSCORE adheres to national and university-level ethical standards.
Invitations to the panels differ for first time recruitment. For the Citizen Panel, invitations are sent by mail and sms, to a randomly drawn population of inhabitants in Norway. For the Panel of Public Administrators, emails are sent to publicly available emails and to entire units. For the Panel of Elected Representatives, invitations are sent by mail and email, to addresses from Kommuneforlaget and addresses found at the pages of the municipality, county, Storting or Sameting.
Data processing follows GDPR article 6, no. 1, letter e (necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller), and article 9 n. 2 letter j (necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject).
Further participation in the panel is by provided written consent, all active respondents are invited by email., and the respondents' data are always treated confidentially. They shall be anonymous in all publicly available data and publications.
Participants receive no payment for participating.
DIGSSCORE and the panels are financed by the University of Bergen (UiB), the data are provided by the UiB, prepared and made available by a subcontractor (Ideas2Evidence), and distributed by the UiB and Sikt (Norwegian Agency for Shared Services in Education and Research).
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