Ethics and Health Research: Decision Making in Aotearoa New Zealand

Abstract

Background: There has been no prior research in Aotearoa New Zealand describing how indigenous Maori engage with researchers in decision processes as participants of health research, even though Maori are often participants in health research. Methods: This article describes the findings of a retrospective qualitative case study of the decision experiences of members of three Maori kin groups (whanau) who have been participants in genetic research. Results: The study found four Maori constructs embedded in the participants’ decision processes. Hui, ¹ rangatiratanga, ² manaakitanga, ³ and kotahitanga ⁴ are multifaceted concepts that featured prominently in decision making for all whanau interviewed. Conclusions: The results confirm philosophical, theoretical, and anecdotal discussions indicating that Maori utilize unique conventions in decision making, which is relevant to health researchers because of the important link between decision making and informed consent.

A hui (pronounced as “who + we”) is a gathering or forum imbued with tikanga or cultural etiquette.

2. Rangatiratanga (pronounced “rar + nga + tea + rar + tar + nga”) has a range of meanings, including autonomy, chiefliness and/or leadership, and positive role modeling.

3. Manaakitanga (pronounced “mar + nar + key + tar + nga”) refers to notions such as guardianship, care, nurturing, and protection.

4. Kotahitanga (pronounced “core + tar + he + tar + nga”) broadly refers to unity and collectivity but also to conventions that protect the integrity of the collective, such as the well-being of the membership.

Keywords:

• decision processes
• indigenous
• research ethics

Acknowledgments

This research was possible because of a doctoral scholarship from the Research Center for Maori Health & Development, Massey University and an emerging researcher grant from the Health Research Council of New Zealand.

Notes

A hui (pronounced as “who + we”) is a gathering or forum imbued with tikanga or cultural etiquette.

2. Rangatiratanga (pronounced “rar + nga + tea + rar + tar + nga”) has a range of meanings, including autonomy, chiefliness and/or leadership, and positive role modeling.

3. Manaakitanga (pronounced “mar + nar + key + tar + nga”) refers to notions such as guardianship, care, nurturing, and protection.

4. Kotahitanga (pronounced “core + tar + he + tar + nga”) broadly refers to unity and collectivity but also to conventions that protect the integrity of the collective, such as the well-being of the membership.

5. The term “Western” refers to the philosophies, knowledge, and institutions of British origin that were embedded into New Zealand society as a result of the country coming under rule by the British monarchy.

Westernization is a generic term used to refer to structures and conventions of predominantly British origin that were favored over Māori systems of knowledge and practice through the introduction of legislation and government policies to support such systems.

Medicalization refers to the adoption of a specific institution of Western scientific knowledge endorsed by the medical profession that dominated health discourses, including the theories of affiliated disciplines such as nursing.

Kawa (pronounced car + wa) refers to etiquette.

TPK succeeded the former Manatu Maori (Ministry of Maori Affairs), also a policy ministry, and Te Tira Ahu Iwi (the Iwi Transition Agency), responsible for the devolution of programs and services delivered by the previous Department of Maori Affairs.

A marae is likened to a small village.

Further information about the tools is available from the author upon request.

A papa kainga, pronounced “par + par and ki (as in kite) + nga,” refers to a traditional tribal settlement or region.

A whanaunga is a relative—either blood kin or common bond.

An issue pronounced like “tar + care.”

Whakapapa is pronounced as “far car” and “par par.”

Kotahitanga refers to unity and collectivity.

Whanaungatanga is about connectedness.