Collective interests, health research ethics and data governance for Indigenous Sámi populations.

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.