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Peer-reviewedCC BY 4.0PLOS Medicine

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

  • Susanna Ragnhild Andersdatter Siri1
  • Christina Storm Mienna2
  • Per Axelsson3
  1. 1Centre for Sami Health Research, Department of Community Medicine, Faculty of Health Sciences, UiT The Arctic University of Norway, Tromsø, Norway
  2. 2Várdduo- Centre for Sámi Research, Faculty of Arts and Humanities, Umeå University, Umeå, Sweden
  3. 3Department of Odontology, Faculty of Medicine, Umeå University, Umeå, Sweden
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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.

In this Perspective, Susanna Siri and colleagues examine ethical guidelines and governance principles relevant to the collection, use, reuse and storage of data for the Sámi population and Indigenous peoples, and provide recommendations on best practice.

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Cite

BibTeXRIS
BibTeX
@article{siri2026collective,
  title = {{Collective interests, health research ethics and data governance for Indigenous Sámi populations}},
  author = {Susanna Ragnhild Andersdatter Siri and Christina Storm Mienna and Per Axelsson},
  journal = {PLOS Medicine},
  year = {2026},
  month = sep,
  doi = {10.1371/journal.pmed.1005250},
  url = {https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1005250},
  note = {CC BY 4.0},
}
RIS
TY  - JOUR
TI  - Collective interests, health research ethics and data governance for Indigenous Sámi populations
AU  - Susanna Ragnhild Andersdatter Siri
AU  - Christina Storm Mienna
AU  - Per Axelsson
PY  - 2026
DA  - 2026/09/14
JO  - PLOS Medicine
DO  - 10.1371/journal.pmed.1005250
UR  - https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1005250
AB  - 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.  In this Perspective, Susanna Siri and colleagues examine ethical guidelines and governance principles relevant to the collection, use, reuse and storage of data for the Sámi population and Indigenous peoples, and provide recommendations on best practice.
SN  - 1549-1676
ER  -