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Updated: Sep 16, 2026

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
Collective interests, health research ethics and data governance for Indigenous Sámi populations
Susanna Ragnhild Andersdatter Siri1, Christina Storm Mienna2,3, Per Axelsson2,4
1Centre for Sami Health Research, Department of Community Medicine, Faculty of Health Sciences, UiT The Arctic University of Norway, Tromsø, Norway.
Abstract:
The General Data Protection Regulation (GDPR) provides a robust framework for regulating individual data collection, use, reuse, and storage across Europe, but offers limited safeguards for collective rights, such as those of Indigenous peoples. Here, we examine specific ethical guidelines and governance principles relevant to the Sámi population, and those general for Indigenous peoples, and offer recommendations for best practices in health research.
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