Ethics and Health Research: Decision Making in Aotearoa New Zealand

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.