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What is the role of Māori EC members? What are the issues for Māori? What should a Māori

ethics framework look like?

Pū Tai Ora

18 October 2006

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Role of Māori EC membersOperational Standard for Ethics Committees 2006Pū Tai Ora

1998?, 1999, 2001, 2002, 2005

Hui Whakapiripiri1996, 1997, 2005, 2006

DeclarationsTe Mataatua Declaration 1993Te Hongoeka Declaration 1996

Tikanga Rangahau Mātauranga Tuku Iho 2004Other literature/contributions

Hirini Mead, Maori Marsden, Kaa Williams, Charles Royal, Moana Jackson, Mason Durie, Mere Roberts, Manuka Henare, Paul Reeves, Aroha Mead, Maui Hudson, Andrew Sporle, Jonathan Koea, Jessika Hutchings mā …

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Role of Māori EC membersOperation Standard - Principles

respect for persons informed consentprivacy & confidentialityvalidityminimisation of harmjusticecultural/social responsibilitycompensation for research participants

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Role of Māori EC membersPū Tai Ora themes

1999tikanga Māori – collective identity, cultural safety, kaumatua supportMāori ethical principles – implementation of ToWtraining/education - quality of consultation/representation/ dissemination

2001self-determination, authority, autonomyMāori ethical principles/models for decision-making

education/wananga/training, developing body of knowledge/expertiseconsistency/solidaritypartnership eg Te Noho Kotahitanga (rangatiratanga, wakaritenga, kaitiakitanga, mahi kotahitanga, ngakau mahaki)

representation within whānau/hapū/iwi, quality of consultation, support processesrequested resources to develop Māori framework for ethical review

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Role of Māori EC membersPū Tai Ora themes cont’d

2002kaitiakitanga/tikanga Māori

Māori EC members as kaitiaki protecting the future, precautionary principlepromotion of mana Māori, mana whenua, mana tangatastrategic planning, development of knowledge-base/expertiseownership/responsibility/accountability for research processquality of consultation with Māorimodels for assessing appropriateness/riskneed for Māori auditing processdevelopment of Kaitiaki guidelines – do no “harm” from Māori perspective, knowledge driven by know-why, protection of mātauranga Māoriinformed consent – collective or individual

requested resources to develop Māori framework for ethical review

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Role of Māori EC membersHui Whakapiripiri 1996

Māori health research ethicsneed for strategic directionMREChanisms for guardianship & protection

what is worthy of protection?need for kaitiaki (national committee) concerns about genetic engineering

tikanga/kaupapa Māori as guiding principlerelated to ‘being Māori’ – language, culture, outcomesconnected to Māori philosophy and principlesconcerned with struggle for autonomy over cultural wellbeing

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Role of Māori EC membersHui Whakapiripiri 1996 – cont’d

Hongoeka Declarationendorsed Mataatua Declaration (1993)

rights of indigenous peoples’ over their cultural and intellectual property

commitment to kaitiakitangaresearch that contributes to whānau/hapū/iwi regaining rangatiratanga/self-determinationovercoming negative impacts of colonisationTe Tiriti as the basis for partnershipkaupapa Māori methodologies accountable to whānau/hapū/iwifocus on past, present and futuremonitoring impact and implications

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Role of Māori EC membersHui Whakapiripiri 1996 – cont’d

Mataatua Declaration on the cultural & Intellectual Property Rights of Indigenous People 1993

urgent need for kaitiakitanga (protection MREChanisms)recognise that indigenous peoples are the guardians of their customary knowledge and cultural traditions moratorium on further commercialisation of indigenous plants/human genetic materials until protection MREChanisms are in place the first beneficiaries of cultural and intellectual propoerty of indigenous people must be the indigenous people themselves

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Role of Māori EC membersHui Whakatipu/piripiri 1997

Ethics/Intellectual Propertytraining on Māori ethical principles/issuesneed for kaitiakitanga (protection MREChanisms)

tikanga Māori research/decision-making modelsownership/quality control of data, process, outcomesaccountability to whānau/hapū/iwiendorsement of Hongoeka Declaration 1996

support for a national Māori health research ethics committeekaitiaki functionimplementation of ToW principlesequity with tauiwi structuresalso supported at Te Ara Ahu Whakamua 1994

Gastric Cancer Susceptibility Project (Parry Guilford) an example of successpartnership with whānau/researchersjoint ownership of data/tissue/intellectual/commercial propertyinvolved collection/banking of gene/tissue samplesprovided model for working with Māori

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Role of Māori EC membersHui Whakapiripiri 2005

concern/outrage quality of Māori consultation processlack of systems for monitoring gene/tissue bankingamendments to ethics application form without consultation

introduction of Section F - Cultural & Social Responsibility replaced Māori responsivenessminimised Treaty of Waitangi obligations

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Role of Māori EC membersPū Tai Ora discussion themes 2005

Māori members roleaccountability to whānau/hapū/iwi/Māori collectivesdevelopment of knowledge-base/education/trainingprotection/guardianship/kaitiakitanga

quality of consultation/representationneed for consensus/consistency no frameworks/models for decision-making on Māori ethical issuesconcerns about tissue/gene banking studies

systems for auditing/monitoring/tracking – where/when/why/who?guidelines/protocols/methodsstorage/access/return/disposal – national/internationalaccreditation/registration of trials/banks/facilitiesinformation about Māori participation/use

need for more information about NZ ethics system – stakeholders/decision-makers/networks/relationships eg SCOTT/GTAC/DSMB/NEACinternational collaborations/systemsMataatua Declaration (other work by Māori/indigenous groups)

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Role of Māori EC membersHui Whakapiripiri 2006

Ngai Tahu ethics focus on quality of consultation tikanga/protocols for disposal/identification of Māori tissue samplesanother model of success

Rod Lea effect collection of gene samples for one purpose (smoking/criminal DNA database) used for another

warrior gene (Australia)average Māori is at least 43% Pākeha (New Orleans)

no mandate/authority/peer-review before presentation of findingsdeception, misinformation, abuse of consent exploitation of Māori

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Role of Māori EC membersHui Whakapiripiri 2006 – cont’d

ethical issues for Māorilanguage as the perfect tool of conquest and acquisition inadequacy of informed consent process

asked in a language that you do not understand“if not fully informed about content, consequences, manner in which findings will be used then it is not consent at all” (Moana Jackson)

science/research as yet another weapon of colonisation colonisation of the land, colonisation of our minds, colonisation of our bodiesglobalisation of culture and identity

role of Māori EC memberstoa – trained to defend our people – what skills do they need?kaitiaki – guardians/protectors of Māori culture/identity

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Role of Māori EC members

Principles of Ethical Review Kaitiaki, Toa

cultural/intellectual property rights, Te Ao

Māori, the right to participate in society as Māori, whānau ora

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Māori ethical frameworks Te Pa Harakeke o te Tangata – Kaa Williams

Te Whakapapa

Te Ira Tangata

Te Whanaungatanga, Te Matemateāone, Te Manaaki, Te Tiaki, Te Atawhai

Te Wairua, Mauri, Tapu

Te Mana

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Māori ethical frameworksThe five tests of tikanga Māori – Hirini Mead

the tapu aspectthe mauri aspectthe take-utu-ea aspectthe precedent aspect

whakapapa

the principles aspectwhanaungatanga manaakitangamananoatika

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Māori ethical frameworksTe Noho Kotahitanga – Hugh Kawharu

value meaning principle

Rangatiratanga Authority/ResponsibilityMāori have authority over Māori dimensions

Wakaritenga Legitimacyeach partner has a legitimate right to be here, to speak freely

Kaitiakitanga guardianship clarify responsibility for guardianship

Mahi kotahitanga co-operation spirit of generosity and co-operation

ngakau mahaaki respectvalue each partners heritage, customs, current needs and future aspirations

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Māori ethical frameworks Kaupapa Māori Practices – Linda Smith

aroha ki te tangata

kanohi kitea

titiro, whakarongo …. korero

manaaki ki te tangata

kia tupato

kaua e takahia te mana o te tangata

kaua e mahaki

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Māori ethical frameworks Koru of Māori Ethics – Manuka Henare

Values

Io-matua-kore

Tapu

Mana

Mauri

Hau

Ethics

wha

naun

gata

nga

wai

ruat

anga

kota

hita

nga

kaiti

akita

nga

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Māori ethical frameworks He Korowai Oranga – Whānau Ora

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Māori ethical frameworks Rangahau Painga – Mason Durie

Function Tasks

Manaakitanga (the capacity to care)

responsiveness to individuals, responsibility for less abled

Tohatohatia (the capacity to share)

meet others needs, fair distribution of goods, interdependence

Pupuri taonga (the capacity for guardianship)

protection and wise management of cultural, intellectual and physical properties

Whakamana (the capacity to empower)

access to resources, development of resources, assisted entry into wider society, participation in hapū/iwi

Whakatakoto tikanga (the capacity to plan ahead)

readiness for change, needs of future generations

Kotahitanga (the capacity for consensus)

working together, collectivity

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Māori ethical frameworks Hōmai te Waiora ki Ahau – Stephanie Palmer

Te Ao Tawhito te wairua te whānau te tikanga

Te Aronui te mauri te tinana

Te Ao Hou te hinengaro te whenua

te mana

te whatumana

Te Awa

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Utility/Challengesdifficult to operationalise

requires grounding in Māori values/worldviewsinterpretations must have meaning for Māorire-training/education/orientation of belief/philosophical/value systemssignificant policy/resourcing implicationsgradual implementation over time

too hard, too expensive, unlikely to be a priority for central government perceived as burdensome, obstacle, slowing down innovation, dis-incentive for researchsecondary/inferior to mainstream system for ethical review - huge investment in Operational Standard

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Working the Operational Standard for MāoriRespect for Persons

Māori worldview is not recognised/respected

never seek/promote opportunities to incorporate collective views

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Working the Operational Standard for MāoriInformed Consent

research objectives are unfamiliar – language/purpose of communication is strangeMāori worldview is never presented, no information about mātauranga Māori risks/content/consequences, individual consent paramount if not fully informed of content, risks and intentions then consent is not consent at allopportunities for collective consent are not explored

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Working the Operational Standard for MāoriPrivacy/Confidentiality & Validity

privacy & confidentiality how do we operationalise MREChanisms for collective ownershipis screening of medical files/data to identify potential participants acceptable?

little public awareness of thisaccess restricted to medical systemexternal researchers not able to exploit this opportunity

validityno analysis of research paradigm from a matauranga Māori point of view

researchers do not have the skillsnot addressed in consultation process

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Working the Operational Standard for MāoriMinimisation of Harm

how do we protect against marginalisation of Māori identity, socialisation of globalised values, dismantling of cultural base??no systems for tracking/monitoring/reporting on Māori participation in

studies especially tissue/gene storage/banking studies (nationally/internationally)further use of data/tissue samplesaccess to samples with/without consent including diagnostic slides whether/when samples are destroyed/returnedincreasing use of de-identification techniques (breaking the link) - not able to seek consent

not able to answer protection/kaitiakitanga questions who/where/why/how/whensystems for Māori ownership of data/samples intellectual/cultural property

systems always lag behind technology egMREC lack basic training/information on relevant issues, eg

where are the tissue/data collection/storage systemswho holds/stores diagnostic slideswho are the decision-makers

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Working the Operational Standard for MāoriJustice

for whom?

how do we acknowledge Māori cultural and intellectual property rights

ToW principles, rights and responsibilities not widely understood/applied

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Working the Operational Standard for MāoriCultural & Social Responsibility

inadequate/unsatisfactory consultationno consistency in frameworks/models for decision-makinglack of clarity around manawhenua/mataawaka processes – reporting, feedback, involvement in decision-making, representation at DHB level training/education on Māori worldviews/ethical issues neededno systems for monitoring quality/appropriateness implementation of Māori ethical frameworks?

how do we increase opportunities for Māori to participate in society as Māori? never look at impacts of research on cultural identity never enough time to explore issues properly in EC meetings/cannot be rigidly applied

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Solutions & Re-solutions?Pū Tai Ora 2005 outcomes/action points

develop strategies for improving MREC accountability to whānau/hapū/iwi MREC to embrace education role training on data/information collection in NZdevelop consensus statements for inclusion in PISconsultation accreditation/quality assurance processimplement auditing/monitoring process – likely to be HRCinformed of NEAC responsibility for Māori ethics framework

discussion document due end 2005NEAC commitment to improve communications with MREC especially on framework issues

MoH to draw up structure diagram showing position and location of key decision-makers/stakeholders/bodies/structures on ethical issues eg SCOTT, GTAC, NEAC, REC

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Solutions & Re-solutions? cont’dPū Tai Ora 2006 discussion points

Section F amendments – cultural and social responsibility?HRCEC clarification of confusion around consultation with Māori?NEAC presentation on Māori Ethics Framework Ngā Pae/ESR doctoral research scholarship to explore ways in which whānau, hapū, iwi and Māori might exercise kaitiakitanga over genetic information

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