health research, the re-indigenisation of aotearoa new zealand & the ethics of ...
DESCRIPTION
Australasian Bioethics & Health Law Conference The Kirby Oration 2012. Mason Durie. Health Research, the re-indigenisation of Aotearoa New Zealand & the ethics of indigeneity. Tui , Tui , Tuituia : Unity. Whakarongo, whakarongo, whakarongo mai ra; - PowerPoint PPT PresentationTRANSCRIPT
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-
enforcementImplications
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 resultsPromoting 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