Establishing a Maori Ethical Framework for Genetic Research with Maori

Abstract

In New Zealand, any research on Mäori health burdens should take steps to minimise harm to Mäori arising out of the research. Researchers are required to minimise harms, which generally fall into four categories: physical; psychological; social; and economic. For research involving Mäori, researchers are additionally obliged under the current Operational Standard for Ethics Committees to minimise harms that may occur to the whänau (family or community), hinengaro (emotional wellbeing and state of mind), wairua (spirit) and tinana (the body or physical self). The concept of harm is broad enough to include ‘pain, stress, fatigue, emotional distress, embarrassment, cultural dissonance and exploitation.

Minimisation of harm be achieved through inclusion of Mäori as ‘partners and participants in the design, implementation, management, and analysis of research about Mäori or Mäori health’. Any research on Mäori conducted in New Zealand should be based on the principles of partnership, participation and protection. Partnership involves working with iwi, hapü, whänau and Mäori communities to ensure Mäori individual and collective rights are respected and protected. Participation involves including Mäori in the design, governance, management, implementation and analysis of research. Protection involves actively protecting Mäori individual and collective rights; Mäori data; and Mäori culture, cultural concepts, values, norms, practices and language in the research process.

This research report introduces the Mana Protocols for genetic research and outlines how such protocols could be developed and used to assist Mäori (whänau, hapü and iwi), researchers, funders and regulators of genetic research.

A Mäori ethical framework for genetics, to be administered by a Mäori ethics committee or similar body, should be established. While legitimate concerns have been raised about the genetic testing of ethnic and indigenous communities, equally strong sentiments have been expressed warning that we should be careful ‘not to throw the baby out with the bath water’. The key is to ensure that the approach to genetic research is balanced in terms of its risks and benefits, and that we do not give genetics a more negative or positive spin than is justified. The need for honesty is paramount. There are many talented and committed Mäori and non-Mäori genetic researchers who believe their science can make a significant contribution to the improvement of community well-being. If genetic research is to be conducted with kaupapa wairua Mäori as its foundation, the benefits will be significantly enhanced.