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

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What is the role of M ori EC members? What are the issues for M ori? What should a M ori ethics framework look like? P Tai Ora 18 October 2006 – PowerPoint PPT presentation

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Title: 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

2
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

3
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

4
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

5
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

6
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

7
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

8
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

9
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

10
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

11
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)

12
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

13
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

14
Role of Maori EC members
15
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

16
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

17
Maori ethical frameworksTe Noho Kotahitanga
Hugh Kawharu
18
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

19
Maori ethical frameworks Koru of Maori Ethics
Manuka Henare
20
Maori ethical frameworks He Korowai Oranga
Whanau Ora
21
Maori ethical frameworks Rangahau Painga Mason
Durie
22
Maori ethical frameworks Homai te Waiora ki Ahau
Stephanie Palmer
23
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

24
Working the Operational Standard for
MaoriRespect for Persons
  • Maori worldview is not recognised/respected
  • never seek/promote opportunities to incorporate
    collective views

25
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

26
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

27
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

28
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

29
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

30
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

31
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

32
Ano te ataahua o te nohotahitanga a nga taina me
nga tuakana i raro i te whakaaro kotahi
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