Health Research, the re-indigenisation of Aotearoa

New Zealand & the ethics of indigeneity

Mason Durie

Australasian Bioethics & Health Law Conference

The Kirby Oration2012

Tui, Tui, Tuituia: Unity

Whakarongo, whakarongo, whakarongo mai ra; Whakarongo ki te tangi a te manu nei; Tui, tui, tuituia; Tuia ki rungaTuia ki raroTuia ki roto, tuia ki wahoTuia ki te here tangata Ki te wheo ao, ki te ao marama.

Listen to the call of the Tui bird

Calling us all to unite

Unite with the skies

Unite with the earth

Unite people with their ancestral lands

Unite individuals with their people

In order to live In a world of light

E nga manuhiri kua tae mai ki Aotearoa, koutou hoki no tenei ao. Tena tatou katoa.

Otira, Ngati Whatua, koutou o te kainga, anei nga mihi whakawhetai ki a koutou i manaakitia mai ki tenei ope e huihui ana ki Tamaki Makaura

Anei tatou i tae mai kia ata tirotiro nga tini take e pa ana ki te hauora tanagta, me nga tumanako mo apopo.

Kia ora.

Greetings to those of you who are visitors to this country; and also to those who live here.

And special recognition of the local tribe, Ngati Whatua, and to those who have contributed to this conference in Auckland.

We have been united by a common quest to discuss the ways in which we can value health and ensure that people can live their lives with dignity and purpose.

Stay well

He Mihi A word of greeting

Justice Michael Kirby

Human RightsHuman Dignity

Indigenous Peoples

5000 indigenous and tribal groups

200 million people

4% of the global population

Maori

Maori

Tribal society (now largely urban)

Population 565,000 (15% of total population)

Life expectancy 72 years (c.f. NZ 79.9 years)

Median age 22.7 years (c.f. NZ 36 years)

Over-represented in most categories of illness and injury.

Distinctiveness

Three Characteristics of Indigeneity

Ecological ties Mana whenua

Human encounters Mana tangata

Autonomy & self determination Mana whakahaere

3 characteristics

An ecological dimensionRangi & Papa

• The elements• Forests & birds• The seas,

waters, fish• Crops & Ferns• Humankind

Spiral

The earth mother and the sky father forced apart by

their children

Separation enabled light and growth

But connections

were retained

Ecological SynergyAhiowhio Wharite

Outward flow of energy

People, land, flora, fauna,water, air, cosmos

Centrifugal direction

Relationships and context give rise to knowledge

Smaller entitiesmake sense when viewedin relationship tolarger entities

Identity

Connections between species

Ecological BondingA Grounded Human Identity

People are part of a wider ecological context

Tangata whenuaPeople of the land

TurangawaewaeA land-based reference point

Mauri

Human EncountersUnderstanding indigenous world views

Relationships between:

People and the natural environment Tangible and intangible dimensions Organic and inorganic material Past and future (intergenerational

continuity) The microscopic and the

macroscopic Tangata whenua (Hosts) and

manuhiri (visitors)Marae

Human EncountersTe Kawa o te MaraeDefining Safe Relationships

• Tangata whenua

• Whaikorero

• Tapu

• Koha

• Social conventions

• Terms of engagement

• Level of risk

• Reciprocity

Autonomy

Autonomy & Self determination:- a response to vulnerability

Potatau te Wherowhero1858

Tuheitia2006

The Maori King

The State

The Treaty of Waitangi1840

Implications

Implications for Research Bioethics

Ecological TiesThe ethics of eco-

connectedness

Human EncountersThe ethics of

engagement

Autonomy and self determinationThe ethics of

empowermentEco-connect

Ecological world views and bioethicsThe ethics of eco-connectedness

Synergies between people and the natural environment Balance between human

endeavours and environmental sustainability

Longstanding connections between species

All environmental forms have a unique ‘mauri’

Balance

Q. 1 Is the research located in an ecological context?

Human & environmental equilibrium Climate change, carbon emissions

Human adaptation to the environment Type II diabetes (living in consumer environments)

Species specificity xenotransplantation

Species survival Assisted reproductive technologies, organ

donations Stem cell research

Engagement

Mediation of human encountersThe Ethics of Engagement

Relationship building – assessing risk & motive Time Space

Agreement on terms Mutual benefits

Mutual respect and mutually re-enforcement

Implications

Q 2 How do researchers engage with indigenous peoples?

What is the reason for engagement with Maori ?

Is the research seeking a sample of Maori views or a sample of views on Indigeneity ?

Who to engage with ?

Where should engagement occur ?

Long term relationship or ‘one off’ ?

Ownership & management of information & data – what arrangements have been negotiated and will they benefit or compromise Maori participants ?

Empowerment

Q 3 Will the research contribute to indigenous empowerment?

Informed Consent

Active participation

Guardianship:

• Knowledgeable

• space to decide

• time to reflect

• Involvement in research design

• advice on research protocol, & methods • Researcher as well as ‘subject’ of research

• research integrity

• Indigenous environmental interests

• research data

• dissemination of results

Promoting ethics

Promoting the ethics of indigeneity

Shifting researcher attitudes

Indigenising ethical standards and protocols

Researcher attitudes

Promoting the ethics of Indigeneity

Extending research horizons

Ethical compliance Mutual benefits

Research method Research impacts

Centripetal focus Centrifugal focus

Recruitment Active participation

Scientific meritTranslational gains

Consultation Relationship

Standards Protocols

Indigenising ethical standards and protocols

Declaration on the Rights of Indigenous Peoples (2007)

WAI 262 Report of the Waitangi Tribunal (2010)

DRIP

The Declaration on the Rights of Indigenous Peoples (46 articles)

‘The Declaration on the Rights of Indigenous Peoples provides a

global benchmark for indigenous heritage, justice, and future

planning.’

Article 31

Declaration on the Rights of Indigenous Peoples

Article 31 1. Indigenous peoples have the right to:

maintain, control, protect and develop their cultural heritage, traditional knowledge and traditional cultural expressions,

as well as the manifestations of their sciences, technologies and cultures,

including human and genetic resources, seeds, medicines, knowledge of the properties of fauna and flora, oral traditions, literatures, designs, sports and traditional games and visual and performing arts.

They also have the right to maintain, control, protect and develop their intellectual property over such cultural heritage, traditional knowledge, and traditional cultural expressions.

Article 32

Declaration on the Rights of Indigenous

PeoplesArticle 32

‘Indigenous peoples have the right to determine and develop priorities and strategies for the development or use of their lands or territories or other resources.’

‘States shall consult and cooperate in good faith with the indigenous peoples concerned through their own representative institutions in order to obtain their free and informed consent prior to the approval of any project affecting their lands and territories or other resources, particularly in connection with the development, utilisation or exploitation of mineral, water or other resources.’

Wai 262

Indigenising ethical standards and protocols

WAI 262 Matauranga Maori

Claim to the Waitangi Tribunal Protection of native flora, fauna, & Maori

knowledge

Claim

1991 claim (Wai 262) to Waitangi Tribunal Crown’s failure to recognise Māori rights &

authority indigenous flora and fauna rights of Iwi in connection with the protection,

control, conservation, management, treatment, propagation, sale, dispersal, utilisation and imposition of restrictions.

Later expanded to include indigenous knowledge, cultural works such as designs, sacred sites,

genetics, indigenous medicinal knowledge, bio-prospecting,

commercialisation resulting from Māori knowledge, culture or properties.

THE WAI 262 CLAIM

Report

the focus is on the relationship between Māori and the resources concerned.

Shared decision-making should be possible without

diminishing the significance of tino rangatiratanga (autonomy)

The principle of partnership is central to New

Zealand’s evolving constitution Partnership should be discussed within a futures

framework rather than as a by-product of historic grievance.

 

The WAI 262 Report

262 Summary

At the heart of the claim was a concern that the Māori

should have full participation in decisions about the

natural environment, Maori health and wellbeing, and works arising from Māori

cultural knowledge

WAI 262 – the significance

Kirby

Australasian Bioethics & Health Law Conference

Justice Michael Kirby

The Ethics of Indigeneity

The ethics of empowerment

The ethics of eco-connectedness

The ethics of engagement

Ecological ties Human encountersAutonomy & self determination

End

An Indigenous Research Ethical Framework

Standards & Protocols for Research with Indigenous Peoples