Health Research, the re-indigenisation of Aotearoa New Zealand & the ethics of indigeneity

1. Australasian Bioethics & Health Law Conference The Kirby Oration 2012 Mason Durie HealthResearch, the re-indigenisation of Aotearoa New Zealand &the ethics of indigeneity

2. Tui, Tui, Tuituia: Unity • Whakarongo, • whakarongo, • whakarongo mai ra; • Whakarongo ki te tangi a • te manu nei; • Tui, tui, tuituia; • Tuia ki runga • Tuia ki raro • Tuia ki roto, tuia ki waho • Tuia 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

3. E ngamanuhirikua tae maikiAotearoa, koutouhoki no teneiao. Tenatatoukatoa. Otira, NgatiWhatua, koutou o tekainga, aneinga mihi whakawhetaiki a koutouimanaakitiamaikiteneiope e huihuianaki Tamaki Makaura Aneitatoui tae maikiaatatirotirongatini take e pa anakitehauoratanagta, me ngatumanakomoapopo. 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, NgatiWhatua, 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

4. Justice Michael Kirby Human Rights Human Dignity

5. Indigenous Peoples • 5000 indigenous and tribal groups • 200 million people • 4% of the global population Maori

6. 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

7. Three Characteristics of Indigeneity • Ecological ties Manawhenua • Human encounters Manatangata • Autonomy & self determination Manawhakahaere 3 characteristics

8. An ecological dimensionRangi & Papa • The elements • Forests & birds • The seas, waters, • fish • Crops & Ferns • Humankind The earth mother and the sky father forced apart by their children But connections were retained Separation enabled light and growth Spiral

9. Ecological SynergyAhiowhioWharite Connections between species Outward flow of energy People, land, flora, fauna, water, air, cosmos Smaller entities make sense when viewed in relationship to larger entities Relationships and context give rise to knowledge Centrifugal direction Identity

10. Ecological BondingA Grounded Human Identity • People are part of a wider ecological context • Tangata whenua People of the land • Turangawaewae A land-based reference point Mauri

11. 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 • Tangatawhenua (Hosts) and manuhiri (visitors) Marae

12. Human EncountersTe Kawa o teMaraeDefining Safe Relationships • Social • conventions • Terms of • engagement • Level of • risk • Reciprocity • Tangata • whenua • Whaikorero • Tapu • Koha Autonomy

13. Autonomy & Self determination:- a response to vulnerability The Treaty of Waitangi 1840 The State Potatau te Wherowhero 1858 The Maori King Tuheitia 2006 Implications

14. Implications for Research Bioethics • Ecological Ties The ethics of eco-connectedness • Human Encounters The ethics of engagement • Autonomy and self determination The ethics of empowerment Eco-connect

15. 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

16. 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

17. 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

18. 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

19. Q 3 Will the research contribute to indigenous empowerment? Promoting ethics

20. Promoting the ethics of indigeneity • Shifting researcher attitudes • Indigenising ethical standards and protocols Researcher attitudes

21. Promoting the ethics of IndigeneityExtending research horizons Ethical compliance Mutual benefits Research method Research impacts Centripetal focus Centrifugal focus Recruitment Active participation Scientific merit Translational gains Consultation Relationship Standards Protocols

22. Indigenising ethical standards and protocols • Declaration on the Rights of Indigenous Peoples (2007) • WAI 262 Report of the Waitangi Tribunal (2010) DRIP

23. 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

24. 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

25. Declaration on the Rights of Indigenous Peoples Article 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

26. Indigenising ethical standards and protocols • WAI 262 Matauranga Maori • Claim to the Waitangi Tribunal • Protection of native flora, fauna, & Maori knowledge Claim

27. THE WAI 262 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. Report

28. The WAI 262 Report • the focus is on the relationship between Māori and the resources concerned. • Shared decision-making should be possible without diminishing the significance of tinorangatiratanga (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. 262 Summary

29. WAI 262 – the significance 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 Kirby

30. Australasian Bioethics & Health Law Conference Justice Michael Kirby

31. An Indigenous Research Ethical Framework The Ethics of Indigeneity The ethics of empowerment Standards & Protocols for Research with Indigenous Peoples The ethics of eco-connectedness The ethics of engagement Autonomy & self determination Human encounters Ecological ties End