Title: What is the role of Maori EC members? What are the issues for Maori? What should a Maori ethics framework look like?
1What 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
2Role 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
3Role 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
4Role 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
5Role 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
6Role 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
7Role 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
8Role 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
9Role 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
10Role 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
11Role 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)
12Role 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
13Role 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
14Role of Maori EC members
15Maori 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
16Maori 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
17Maori ethical frameworksTe Noho Kotahitanga
Hugh Kawharu
18Maori 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
19Maori ethical frameworks Koru of Maori Ethics
Manuka Henare
20Maori ethical frameworks He Korowai Oranga
Whanau Ora
21Maori ethical frameworks Rangahau Painga Mason
Durie
22Maori ethical frameworks Homai te Waiora ki Ahau
Stephanie Palmer
23Utility/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
24Working the Operational Standard for
MaoriRespect for Persons
- Maori worldview is not recognised/respected
- never seek/promote opportunities to incorporate
collective views
25Working 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
26Working 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
27Working 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
28Working 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
29Working 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
30Solutions 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
31Solutions 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
32Ano te ataahua o te nohotahitanga a nga taina me
nga tuakana i raro i te whakaaro kotahi