Ethical Guidelines for Health Research in the Sami Population
The past 20 years have seen increasing research with a focus on Sami health and living conditions. Extensive rules and legislation ensure the rights of participants in research projects. However, there have been no guidelines or legislation to ensure the rights of groups to the data collected about them or the return of the knowledge to the communities where the research was conducted. This is the background to the creation of ethical guidelines for Sami health research.
In 2015, the Sami Parliament and the Centre for Sami Health Research started work on the development of ethical guidelines for Sami health research. The aim of these guidelines is to enhance the collective rights of the Sami as an indigenous people in health research projects. Ethical Guidelines for Sami Health Research were adopted by the Sami Parliament in 2019. The authority to give Sami collective consent was delegated to an ethics expert committee.
The project “Ethical Guidelines for Health Research in the Sami Population” consisted of the following three parts:
Part 1
Part 1 was a mapping of quantitative health research related to the Sami in Norway over the past 30 years. The mapping was conducted by the Centre for Sami Health Research and was completed in 2015. Report Part 1:
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Bruk av samisk etnisitet i forskningsdatabaser og helseregistre |
Part 2
Part 2 of the project provided a general overview of important guidelines for health research on indigenous peoples in comparable countries. This work was performed by the Centre for Sami Health Research and was completed in 2016. Report Part 2:
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Etiske retningslinjer for helseforskning på urfolk |
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Etihkalaš njuolggadusat álgoálbmotdearvvašvuođadutkama várás |
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Ethical guidelines for indigenous health research |
Part 3
Part 3 consisted of drawing up a proposal for guidelines. In 2016, the Sami Parliament appointed a working committee to prepare a proposal for ethical guidelines for Sami health research and research on Sami human biological material. The committee consisted of representatives from the Sami Parliament, the Regional Committee for Medical and Health Research Ethics (REK Nord), a lawyer from the University of Oslo and health researchers from the Centre for Sami Health Research, the Department of Clinical Medicine at UiT The Arctic University of Norway and from Umeå University. The proposal was submitted to the Sami Parliament Council on 4 December 2017 and consultations on the proposal were held in the spring of 2018. The guidelines were finally adopted by the Sami Parliament in 2019. Report Part 3: