Establishing a Maori Ethical Framework for Genetic Research with Maori

GENES, SOCIETY AND THE FUTURE, Vol. I, Part 4, Human Genome Research Project, Dunedin, NZ, 2007

44 Pages Posted: 3 May 2011

See all articles by Bevan Tipene-Matua

Bevan Tipene-Matua

University of Otago6

Mark Henaghan

University of Otago; University of Otago

Date Written: October 24, 2007

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.

Keywords: Law, Genetics, Ethics, Human Genome, Genes, Treaty of Waitangi, Maori

Suggested Citation

Tipene-Matua, Bevan and Henaghan, Mark, Establishing a Maori Ethical Framework for Genetic Research with Maori (October 24, 2007). GENES, SOCIETY AND THE FUTURE, Vol. I, Part 4, Human Genome Research Project, Dunedin, NZ, 2007 . Available at SSRN: https://ssrn.com/abstract=1828470 or http://dx.doi.org/10.2139/ssrn.1828470

Bevan Tipene-Matua

University of Otago6 ( email )

PO Box 56
Dunedin North
Dunedin, 9016
New Zealand
6434795324 (Phone)
6434798855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

Mark Henaghan (Contact Author)

University of Otago ( email )

Faculty of Law
P.O. Box 56
Dunedin, 9054
New Zealand
64 3 479 5324 (Phone)
64 3 479 8855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

University of Otago ( email )

PO Box 56
Dunedin North
Dunedin, 9016
New Zealand
6434798854 (Phone)
644798855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

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