1. What is the role of Māori EC members. What are the issues for Māori
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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2. Role of 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 …
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3. Role of Māori EC members Operation 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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4. Role of Māori EC members Pū 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
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5. Role of Māori EC members Pū 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
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6. Role of Māori EC members Hui 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
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7. Role of Māori EC members Hui 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
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8. Role of Māori EC members Hui 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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9. Role of Māori EC members Hui 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
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10. Role of Māori EC members Hui 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
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11. Role of Māori EC members Pū 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)
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12. Role of Māori EC members Hui 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
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13. Role of Māori EC members Hui 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
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14. Role of Māori EC members
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15. 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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16. Māori ethical frameworks 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
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17. Māori ethical frameworks Te Noho Kotahitanga – Hugh Kawharu
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18. 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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19. Māori ethical frameworks Koru of Māori Ethics – Manuka Henare
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20. Māori ethical frameworks He Korowai Oranga – Whānau Ora
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21. Māori ethical frameworks Rangahau Painga – Mason Durie
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22. Māori ethical frameworks Hōmai te Waiora ki Ahau – Stephanie Palmer
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23. Utility/Challenges 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
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24. Working the Operational Standard for Māori Respect for Persons
Māori worldview is not recognised/respected
never seek/promote opportunities to incorporate collective views
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25. Working the Operational Standard for Māori 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
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26. Working the Operational Standard for Māori Privacy/Confidentiality & Validity
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
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27. Working the Operational Standard for Māori 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
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28. Working the Operational Standard for Māori Justice
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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29. Working the Operational Standard for Māori 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
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30. 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 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
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31. Solutions & Re-solutions? cont’d 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
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32. Ano te ataahua o te nohotahitanga a ngā taina me ngā tuakana i raro i te whakaaro kotahi
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