Te Pouherenga Waka

1
Te Pouherenga Waka

• An action-plan for addressing Maori ethical
  issues within the process of human ethical review

Tumana Research March 2009
2
Kei te mihi

• Robert Reisinger Memorial Trust
• toku whanau
• Khyla, Moe, Barry, Paul, Maui Polly

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NZs system of ethical review

• international codes declarations
• statutory constitutional provisions
• complex network of committees
• HRCEC, GTAC, SCOTT, DMCC, ANCTR, ECA, ACART,
  ECART, NEAC,HDECs (x7)
• multiple terms of reference
• Operation Standard
• mechanisms for participation/protection

4
Operation Standard
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Reassurances

• Treaty principles
• protection of Maori cultural concepts
• collective consent, tikanga, whanau
• informed consent
• in a language that is understood
• valid contribution to knowledge
• do no harm, hopefully do some good?

6
Protection Participation (HDECs)

• Maori members
• mana whenua/mataawaka relationships
• Putaiora annual hui
• Section F
• HRC guidelines, impact on Maori, consistent with
  Treaty, evidence of consultation
• Locality Assessment
• progress/end of study reports
• annual reports
• how many read HRC guidelines, appropriate
  consultation, process/mechanisms for consultation

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Protection Participation (ECART)

• Maori members
• research applicants
• how are cultural issues addressed including ToW
  in all aspects of research?
• medical specialists for donors/recipients
• how will different ethical, spiritual, cultural
  perspectives in society, including the needs
  beliefs of Maori be considered and treated?
• counsellors
• how was service culturally appropriate
• how have whakapapa, and the needs, values,
  beliefs of Maori been considered and managed
• key person statement eg kaumatua
• annual report
• ethnicity of donors/recipients having fertility
  treatment
• register

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Why a Maori Ethics Framework?

• representation
• self-nominating
• appointed as individuals not collective voice
• burden/responsibility
• consultation
• mana whenua not engaged
• DHB/university based
• credibility, reliability, consistency
• inadequate Section F
• over-ruled by other principles
• disempowered by diversity
• expedited review (14-33)

• informed consent
• no matauranga Maori
• consent is not consent at all if not in language
  that can be understood
• transgression
• data collection
• not informing process of representation
• not collecting key data on responses to cultural
  issues
• reporting
• no dissemination
• not monitoring
• no understanding

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Te Pouherenga Waka
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Mana

• who has the legitimate power and authority to
  represent Maori positions
• consultation groups
• Maori EC members
• what do they represent
• matauranga Maori?
• kaitiakitanga?
• what is the Maori view on kaitiakitanga?
• how do we empower the representation process

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Tikanga

• collect baseline data
• understand the representation process

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Tikanga

• empower representatives
• monitor Operation Standard
• track progress in annual report

13
Tikanga

• reporting on the special issues

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Whakapapa

• rationale, purpose for being
• analytical tool
• monitors progress and change
• layer upon layer of information
• a framework for gathering, organising, making
  sense of
• the weaving information together
• generating knowledge, wisdom, understanding

• whakapapa is
• process of analysis,
• creation of matauranga Maori
• establishment of a platform for knowing and
  understanding
• the pathway that will lead to kaitiakitanga
• completely and utterly dependent on breadth and
  quality of information
• Maori must actively and pro-actively engage in
  weaving together the various strands of
  information that are available

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Whakapapa
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Whakapapa

• who is weaving the whakapapa together?
• Maori Advisory Committee?
• Maori Commissioner?
• National Maori Ethics Committee?
• delegated Maori leaders?
• what are the benefits and implications?
• capacity to generate knowledge about
  kaitiakitanga
• meaningfully consider, respond to, provide
  leadership on wider, more complex issues eg
• empowerment of the representation process
• tikanga
• consensus statements
• matauranga Maori
• eco-connectedness, protection of species,
  synergistic relationships
• risks and benefits
• how is kaitiakitanga be sustained?

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Te Pouherenga Waka

• empowering the representation process
• gathering and reporting relevant data
• investing in analysis to generate knowledge