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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. Role of Māori EC members. Operational Standard for Ethics Committees 2006 Pū Tai Ora 1998?, 1999, 2001, 2002, 2005 Hui Whakapiripiri

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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

TUMANA RESEARCH


Role of m ori ec members
Role of for Māori? What should a Māori ethics framework look like?Māori EC members

  • Operational Standard for Ethics Committees 2006

  • Pū Tai Ora

    • 1998?, 1999, 2001, 2002, 2005

  • Hui Whakapiripiri

    • 1996, 1997, 2005, 2006

  • Declarations

    • Te Mataatua Declaration 1993

    • Te Hongoeka Declaration 1996

  • Tikanga Rangahau Mātauranga Tuku Iho 2004

  • Other 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 …

TUMANA RESEARCH


Role of m ori ec members operation standard principles
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersOperation Standard- Principles

  • respect for persons

  • informed consent

  • privacy & confidentiality

  • validity

  • minimisation of harm

  • justice

  • cultural/social responsibility

  • compensation for research participants

TUMANA RESEARCH


Role of m ori ec members p tai ora themes
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersPū Tai Ora themes

  • 1999

    • tikanga Māori – collective identity, cultural safety, kaumatua support

    • Māori ethical principles – implementation of ToW

    • training/education - quality of consultation/representation/ dissemination

  • 2001

    • self-determination, authority, autonomy

    • Māori ethical principles/models for decision-making

      • education/wananga/training, developing body of knowledge/expertise

      • consistency/solidarity

      • partnership eg Te Noho Kotahitanga (rangatiratanga, wakaritenga, kaitiakitanga, mahi kotahitanga, ngakau mahaki)

    • representation within whānau/hapū/iwi, quality of consultation, support processes

    • requested resources to develop Māori framework for ethical review

TUMANA RESEARCH


Role of m ori ec members p tai ora themes cont d
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersPū Tai Ora themes cont’d

  • 2002

    • kaitiakitanga/tikanga Māori

      • Māori EC members as kaitiaki

      • protecting the future, precautionary principle

      • promotion of mana Māori, mana whenua, mana tangata

      • strategic planning, development of knowledge-base/expertise

      • ownership/responsibility/accountability for research process

      • quality of consultation with Māori

      • models for assessing appropriateness/risk

      • need for Māori auditing process

      • development of Kaitiaki guidelines – do no “harm” from Māori perspective, knowledge driven by know-why, protection of mātauranga Māori

      • informed consent – collective or individual

    • requested resources to develop Māori framework for ethical review

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 1996
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakapiripiri 1996

  • Māori health research ethics

    • need for strategic direction

    • MREChanisms for guardianship & protection

      • what is worthy of protection?

      • need for kaitiaki (national committee)

      • concerns about genetic engineering

    • tikanga/kaupapa Māori as guiding principle

      • related to ‘being Māori’ – language, culture, outcomes

      • connected to Māori philosophy and principles

      • concerned with struggle for autonomy over cultural wellbeing

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 1996 cont d
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakapiripiri 1996 – cont’d

  • Hongoeka Declaration

    • endorsed Mataatua Declaration (1993)

      • rights of indigenous peoples’ over their cultural and intellectual property

    • commitment to kaitiakitanga

      • research that contributes to whānau/hapū/iwi

      • regaining rangatiratanga/self-determination

      • overcoming negative impacts of colonisation

      • Te Tiriti as the basis for partnership

      • kaupapa Māori methodologies

      • accountable to whānau/hapū/iwi

      • focus on past, present and future

      • monitoring impact and implications

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 1996 cont d1
Role of for Māori? What should a Māori ethics framework look like?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

TUMANA RESEARCH


Role of m ori ec members hui whakatipu piripiri 1997
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakatipu/piripiri 1997

  • Ethics/Intellectual Property

    • training on Māori ethical principles/issues

    • need for kaitiakitanga (protection MREChanisms)

      • tikanga Māori research/decision-making models

      • ownership/quality control of data, process, outcomes

      • accountability to whānau/hapū/iwi

      • endorsement of Hongoeka Declaration 1996

    • support for a national Māori health research ethics committee

      • kaitiaki function

      • implementation of ToW principles

      • equity with tauiwi structures

      • also supported at Te Ara Ahu Whakamua 1994

  • Gastric Cancer Susceptibility Project (Parry Guilford)

    • an example of success

    • partnership with whānau/researchers

    • joint ownership of data/tissue/intellectual/commercial property

    • involved collection/banking of gene/tissue samples

    • provided model for working with Māori

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 2005
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakapiripiri 2005

  • concern/outrage

    • quality of Māori consultation process

    • lack of systems for monitoring gene/tissue banking

    • amendments to ethics application form without consultation

      • introduction of Section F - Cultural & Social Responsibility

      • replaced Māori responsiveness

      • minimised Treaty of Waitangi obligations

TUMANA RESEARCH


Role of m ori ec members p tai ora discussion themes 2005
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersPū Tai Ora discussion themes 2005

  • Māori members role

    • accountability to whānau/hapū/iwi/Māori collectives

    • development of knowledge-base/education/training

    • protection/guardianship/kaitiakitanga

  • quality of consultation/representation

  • need for consensus/consistency

  • no frameworks/models for decision-making on Māori ethical issues

  • concerns about tissue/gene banking studies

    • systems for auditing/monitoring/tracking – where/when/why/who?

    • guidelines/protocols/methods

    • storage/access/return/disposal – national/international

    • accreditation/registration of trials/banks/facilities

    • information about Māori participation/use

  • need for more information about

    • NZ ethics system – stakeholders/decision-makers/networks/relationships eg SCOTT/GTAC/DSMB/NEAC

    • international collaborations/systems

    • Mataatua Declaration (other work by Māori/indigenous groups)

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 2006
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakapiripiri 2006

  • Ngai Tahu ethics

    • focus on quality of consultation

    • tikanga/protocols for disposal/identification of Māori tissue samples

    • another 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 findings

    • deception, misinformation, abuse of consent

    • exploitation of Māori

TUMANA RESEARCH


Role of m ori ec members hui whakapiripiri 2006 cont d
Role of for Māori? What should a Māori ethics framework look like?Māori EC membersHui Whakapiripiri 2006 – cont’d

  • ethical issues for Māori

    • language 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 bodies

      • globalisation of culture and identity

  • role of Māori EC members

    • toa – trained to defend our people – what skills do they need?

    • kaitiaki – guardians/protectors of Māori culture/identity

TUMANA RESEARCH


Role of m ori ec members1
Role of for Māori? What should a Māori ethics framework look like?Māori EC members

TUMANA RESEARCH


M ori ethical frameworks te pa harakeke o te tangata kaa williams
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?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

TUMANA RESEARCH


M ori ethical frameworks the five tests of tikanga m ori hirini mead
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?The five tests of tikanga Māori – Hirini Mead

  • the tapu aspect

  • the mauri aspect

  • the take-utu-ea aspect

  • the precedent aspect

    • whakapapa

  • the principles aspect

    • whanaungatanga

    • manaakitanga

    • mana

    • noa

    • tika

TUMANA RESEARCH


M ori ethical frameworks te noho kotahitanga hugh kawharu
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?Te Noho Kotahitanga – Hugh Kawharu

TUMANA RESEARCH


M ori ethical frameworks kaupapa m ori practices linda smith
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?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

TUMANA RESEARCH


M ori ethical frameworks koru of m ori ethics manuka henare
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?Koru of Māori Ethics – Manuka Henare

TUMANA RESEARCH


M ori ethical frameworks he korowai oranga wh nau ora
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?He Korowai Oranga – Whānau Ora

TUMANA RESEARCH


M ori ethical frameworks rangahau painga mason durie
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?Rangahau Painga – Mason Durie

TUMANA RESEARCH


M ori ethical frameworks h mai te waiora ki ahau stephanie palmer
Māori ethical frameworks for Māori? What should a Māori ethics framework look like?Hōmai te Waiora ki Ahau – Stephanie Palmer

TUMANA RESEARCH


Utility challenges
Utility/Challenges for Māori? What should a Māori ethics framework look like?

  • difficult to operationalise

    • requires grounding in Māori values/worldviews

    • interpretations must have meaning for Māori

    • re-training/education/orientation of belief/philosophical/value systems

    • significant policy/resourcing implications

    • gradual 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 research

  • secondary/inferior to mainstream system for ethical review - huge investment in Operational Standard

TUMANA RESEARCH


Working the operational standard for m ori respect for persons
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Respect for Persons

  • Māori worldview is not recognised/respected

  • never seek/promote opportunities to incorporate collective views

TUMANA RESEARCH


Working the operational standard for m ori informed consent
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Informed Consent

  • research objectives are unfamiliar – language/purpose of communication is strange

  • Māori 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 all

  • opportunities for collective consent are not explored

TUMANA RESEARCH


Working the operational standard for m ori privacy confidentiality validity
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Privacy/Confidentiality & Validity

  • privacy & confidentiality

    • how do we operationalise MREChanisms for collective ownership

    • is screening of medical files/data to identify potential participants acceptable?

      • little public awareness of this

      • access restricted to medical system

      • external researchers not able to exploit this opportunity

  • validity

    • no analysis of research paradigm from a matauranga Māori point of view

      • researchers do not have the skills

      • not addressed in consultation process

TUMANA RESEARCH


Working the operational standard for m ori minimisation of harm
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Minimisation 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 samples

    • access to samples with/without consent including diagnostic slides

    • whether/when samples are destroyed/returned

    • increasing use of de-identification techniques (breaking the link) - not able to seek consent

  • not able to answer protection/kaitiakitanga questions

    • who/where/why/how/when

    • systems for Māori ownership of data/samples intellectual/cultural property

  • systems always lag behind technology eg

  • MREC lack basic training/information on relevant issues, eg

    • where are the tissue/data collection/storage systems

    • who holds/stores diagnostic slides

    • who are the decision-makers

TUMANA RESEARCH


Working the operational standard for m ori justice
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Justice

  • for whom?

  • how do we acknowledge Māori cultural and intellectual property rights

  • ToW principles, rights and responsibilities not widely understood/applied

TUMANA RESEARCH


Working the operational standard for m ori cultural social responsibility
Working the Operational Standard for Māori for Māori? What should a Māori ethics framework look like?Cultural & Social Responsibility

  • inadequate/unsatisfactory consultation

    • no consistency in frameworks/models for decision-making

    • lack of clarity around manawhenua/mataawaka processes – reporting, feedback, involvement in decision-making, representation at DHB level

    • training/education on Māori worldviews/ethical issues needed

    • no 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

TUMANA RESEARCH


Solutions re solutions p tai ora 2005 outcomes action points
Solutions & Re-solutions? for Māori? What should a Māori ethics framework look like?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 NZ

  • develop consensus statements for inclusion in PIS

  • consultation accreditation/quality assurance process

  • implement auditing/monitoring process – likely to be HRC

  • informed of NEAC responsibility for Māori ethics framework

    • discussion document due end 2005

    • NEAC 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

TUMANA RESEARCH


Solutions re solutions cont d p tai ora 2006 discussion points
Solutions & Re-solutions? cont’d for Māori? What should a Māori ethics framework look like?Pū 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

TUMANA RESEARCH


Ano te ataahua o te nohotahitanga a ng taina me ng tuakana i raro i te whakaaro kotahi

Ano te ataahua o te nohotahitanga a ngā taina me ngā tuakana i raro i te whakaaro kotahi

TUMANA RESEARCH


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