Ethical guidelines for Sami research: the issue that disappeared from the Norwegian Sami Parliament's agenda?

Abstract

Background

In recent decades many indigenous communities, policy makers and researchers worldwide have criticized the academic community for not being aware of the specific challenges these communities have faced and still are facing with regard to research. One result of the decades of discourse in indigenous communities is the development in many Western countries of indigenously sensitive ethical research guidelines. In 1997 the Sami Parliament (SP) in Norway reached a unanimous decision that ethical guidelines for Sami research had to be drawn up. Such guidelines are however still to be created.

Objectives

The objectives of this article are to enquire into what happened to the Norwegian SP's decision of 1997 and to reflect on why the issue seems to have disappeared from the SP's agenda. Finally, we consider whether research ethics is to be a subject for the research community only.

Methods

A review of parliamentary white papers on research and SP documents relating to research ethics.

Findings

The response to the SP's decision in 1997 took place in two different channels, both of them national, namely the research ethics channel and the political channel. Thus, there were actually two parallel processes taking place. In spite of nearly two decades of reports, the concept of the participation of indigenous communities in research is still not an integral part of Norwegian ethical guidelines.

Conclusions

The issue of indigenously sensitive research ethics seems to have disappeared from the SP's agenda and the research ethics review system with regard to Sami research is with minor adjustments the same as when the SP asked for a revision.

• research ethics
• indigenous
• Sami
• Norway

Acknowledgements

The authors wish to thank the following institution for financial support to the research project “Every Day Life of Reindeer Herders”: The Northern Norway Regional Health Authorities, Finnmark Hospital Trust, Sami National Centre for Mental Health, The Reindeer Development Fund and The Norwegian Sami Parliament.

Conflict of interest and funding

The authors have not received any funding or benefits from industry or elsewhere to conduct this study.

Notes

¹The Sami Parliament (Sámediggi) is an elected assembly that represents the Sami population in Norway. Thirty-nine members of parliament are elected from seven constituencies every fourth year, at the same time as the national election to the Norwegian Parliament (Stortinget). A separate electoral roll has been established for Sami parliamentary elections. All Sami above the age of 18 are entitled to register in the electoral roll and vote in Sami parliamentary elections. There are also Sami Parliaments in Sweden and Finland.

²The Social and Health Committee of the Finnish Sami Parliament stated September 11th, 2014 the importance of ethical questions being clarified and asked their administration to be in dialog with the Norwegian Sami Parliament on the issue. The executive board of the Swedish Sami Parliament noted in their meeting 9 December 2014, the lack of Sami competence in ethical review boards, and decided to proceed with the issue.

³Since the last white paper on research, Norway has elected a new government. The Bondevik II government left office in the autumn of 2005 to be replaced by the Stoltenberg I government. In the 2007 elections Stoltenberg II was voted in and remained in office until autumn 2013.

⁴As an indigenous people the Sami have a right to be consulted on issues that may have a direct bearing on them. The Norwegian Government and the SP have signed an agreement specifying how consultation is to take place.

⁵The background for this decision is that the Center for Sami Health Research at the University of Tromsø had called upon the SP to take part in establishing guidelines for the use of the biological tissues they possess, which researchers worldwide have been interested in getting access to. The parliamentary conference of the three Sami parliaments also addressed this issue in 2011, stating their concern about the potential exploitation of indigenous genetic resources (www.sametinget.se/78433).

⁶Sami University College has, as a member of WINHEC, adopted their guidelines for research ethics in indigenous societies (7).

⁷The CIHR guidelines were in effect from May 2007 until December 2010. Health research involving indigenous people in Canada is now governed by the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPC).

⁸On the website of the national ethics committees the key words “ethnic group,” “indigenous” or “Sami” are not mentioned under the column “What are you doing research on?” One has to go to their virtual ethics library to find a discussion on these aspects (33, (34)).