What is the role of Maori EC members? What are the issues for Maori? What should a Maori ethics framework look like?

1
What is the role of Maori EC members? What are
the issues for Maori? What should a Maori ethics
framework look like?

• Pu Tai Ora
• 18 October 2006

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Role of Maori EC members

• Operational Standard for Ethics Committees 2006
• Pu Tai Ora
• 1998?, 1999, 2001, 2002, 2005
• Hui Whakapiripiri
• 1996, 1997, 2005, 2006
• Declarations
• Te Mataatua Declaration 1993
• Te Hongoeka Declaration 1996
• Tikanga Rangahau Matauranga 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 ma

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Role of Maori EC membersOperation Standard -
Principles

• respect for persons
• informed consent
• privacy confidentiality
• validity
• minimisation of harm
• justice
• cultural/social responsibility
• compensation for research participants

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Role of Maori EC membersPu Tai Ora themes

• 1999
• tikanga Maori collective identity, cultural
  safety, kaumatua support
• Maori ethical principles implementation of ToW
• training/education - quality of
  consultation/representation/ dissemination
• 2001
• self-determination, authority, autonomy
• Maori 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 whanau/hapu/iwi, quality of
  consultation, support processes
• requested resources to develop Maori framework
  for ethical review

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Role of Maori EC membersPu Tai Ora themes contd

• 2002
• kaitiakitanga/tikanga Maori
• Maori EC members as kaitiaki
• protecting the future, precautionary principle
• promotion of mana Maori, mana whenua, mana
  tangata
• strategic planning, development of
  knowledge-base/expertise
• ownership/responsibility/accountability for
  research process
• quality of consultation with Maori
• models for assessing appropriateness/risk
• need for Maori auditing process
• development of Kaitiaki guidelines do no harm
  from Maori perspective, knowledge driven by
  know-why, protection of matauranga Maori
• informed consent collective or individual
• requested resources to develop Maori framework
  for ethical review

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Role of Maori EC membersHui Whakapiripiri 1996

• Maori 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 Maori as guiding principle
• related to being Maori language, culture,
  outcomes
• connected to Maori philosophy and principles
• concerned with struggle for autonomy over
  cultural wellbeing

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Role of Maori EC membersHui Whakapiripiri 1996
contd

• Hongoeka Declaration
• endorsed Mataatua Declaration (1993)
• rights of indigenous peoples over their cultural
  and intellectual property
• commitment to kaitiakitanga
• research that contributes to whanau/hapu/iwi
• regaining rangatiratanga/self-determination
• overcoming negative impacts of colonisation
• Te Tiriti as the basis for partnership
• kaupapa Maori methodologies
• accountable to whanau/hapu/iwi
• focus on past, present and future
• monitoring impact and implications

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Role of Maori EC membersHui Whakapiripiri 1996
contd

• 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 Maori EC membersHui Whakatipu/piripiri
1997

• Ethics/Intellectual Property
• training on Maori ethical principles/issues
• need for kaitiakitanga (protection MREChanisms)
• tikanga Maori research/decision-making models
• ownership/quality control of data, process,
  outcomes
• accountability to whanau/hapu/iwi
• endorsement of Hongoeka Declaration 1996
• support for a national Maori 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 whanau/researchers
• joint ownership of data/tissue/intellectual/commer
  cial property
• involved collection/banking of gene/tissue
  samples
• provided model for working with Maori

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Role of Maori EC membersHui Whakapiripiri 2005

• concern/outrage
• quality of Maori 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 Maori responsiveness
• minimised Treaty of Waitangi obligations

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Role of Maori EC membersPu Tai Ora discussion
themes 2005

• Maori members role
• accountability to whanau/hapu/iwi/Maori
  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 Maori
  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/facilit
  ies
• information about Maori participation/use
• need for more information about
• NZ ethics system stakeholders/decision-makers/ne
  tworks/relationships eg SCOTT/GTAC/DSMB/NEAC
• international collaborations/systems
• Mataatua Declaration (other work by
  Maori/indigenous groups)

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Role of Maori EC membersHui Whakapiripiri 2006

• Ngai Tahu ethics
• focus on quality of consultation
• tikanga/protocols for disposal/identification of
  Maori 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 Maori is at least 43 Pakeha (New
  Orleans)
• no mandate/authority/peer-review before
  presentation of findings
• deception, misinformation, abuse of consent
• exploitation of Maori

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Role of Maori EC membersHui Whakapiripiri 2006
contd

• ethical issues for Maori
• 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 Maori EC members
• toa trained to defend our people what skills
  do they need?
• kaitiaki guardians/protectors of Maori
  culture/identity

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Role of Maori EC members
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Maori ethical frameworks Te Pa Harakeke o te
Tangata Kaa Williams

• Te Whakapapa
• Te Ira Tangata
• Te Whanaungatanga, Te Matemateaone, Te Manaaki,
  Te Tiaki, Te Atawhai
• Te Wairua, Mauri, Tapu
• Te Mana

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Maori ethical frameworksThe five tests of
tikanga Maori 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

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Maori ethical frameworksTe Noho Kotahitanga
Hugh Kawharu
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Maori ethical frameworks Kaupapa Maori 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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Maori ethical frameworks Koru of Maori Ethics
Manuka Henare
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Maori ethical frameworks He Korowai Oranga
Whanau Ora
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Maori ethical frameworks Rangahau Painga Mason
Durie
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Maori ethical frameworks Homai te Waiora ki Ahau
Stephanie Palmer
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Utility/Challenges

• difficult to operationalise
• requires grounding in Maori values/worldviews
• interpretations must have meaning for Maori
• 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

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Working the Operational Standard for
MaoriRespect for Persons

• Maori worldview is not recognised/respected
• never seek/promote opportunities to incorporate
  collective views

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Working the Operational Standard for
MaoriInformed Consent

• research objectives are unfamiliar
  language/purpose of communication is strange
• Maori worldview is never presented, no
  information about matauranga Maori
  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

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Working the Operational Standard for
MaoriPrivacy/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 Maori point of view
• researchers do not have the skills
• not addressed in consultation process

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Working the Operational Standard for
MaoriMinimisation of Harm

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

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Working the Operational Standard for MaoriJustice

• for whom?
• how do we acknowledge Maori cultural and
  intellectual property rights
• ToW principles, rights and responsibilities not
  widely understood/applied

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Working the Operational Standard for
MaoriCultural 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 Maori worldviews/ethical
  issues needed
• no systems for monitoring quality/appropriateness
  
• implementation of Maori ethical frameworks?
• how do we increase opportunities for Maori to
  participate in society as Maori?
• 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?Pu Tai Ora 2005
outcomes/action points

• develop strategies for improving MREC
  accountability to whanau/hapu/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 Maori 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/b
  odies/structures on ethical issues eg SCOTT,
  GTAC, NEAC, REC

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Solutions Re-solutions? contdPu Tai Ora 2006
discussion points

• Section F amendments cultural and social
  responsibility?
• HRCEC clarification of confusion around
  consultation with Maori?
• NEAC presentation on Maori Ethics Framework
• Nga Pae/ESR doctoral research scholarship to
  explore ways in which whanau, hapu, iwi and Maori
  might exercise kaitiakitanga over genetic
  information

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