Establishing a Maori Ethical Framework for Genetic Research with Maori

Abstract

In New Zealand, any research on Maori health burdens should take steps to minimise harm to Maori 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 Maori, researchers are additionally obliged under the current Operational Standard for Ethics Committees to minimise harms that may occur to the whanau (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 Maori as ‘partners and participants in the design, implementation, management, and analysis of research about Maori or Maori health’. Any research on Maori conducted in New Zealand should be based on the principles of partnership, participation and protection. Partnership involves working with iwi, hapu, whanau and Maori communities to ensure Maori individual and collective rights are respected and protected. Participation involves including Maori in the design, governance, management, implementation and analysis of research. Protection involves actively protecting Maori individual and collective rights; Maori data; and Maori 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 Maori (whanau, hapu and iwi), researchers, funders and regulators of genetic research.A Maori ethical framework for genetics, to be administered by a Maori 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 Maori and non-Maori 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 Maori as its foundation, the benefits will be significantly enhanced.