1. TUMANA RESEARCH 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

2. TUMANA RESEARCH 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 …

3. TUMANA RESEARCH 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

4. TUMANA RESEARCH 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

5. TUMANA RESEARCH 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

6. TUMANA RESEARCH 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

7. TUMANA RESEARCH 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

8. TUMANA RESEARCH 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

9. TUMANA RESEARCH 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

10. TUMANA RESEARCH 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

11. TUMANA RESEARCH 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)

12. TUMANA RESEARCH 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

13. TUMANA RESEARCH 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

14. TUMANA RESEARCH Role of Māori EC members

15. TUMANA RESEARCH 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

16. TUMANA RESEARCH 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

17. TUMANA RESEARCH Māori ethical frameworks Te Noho Kotahitanga – Hugh Kawharu

18. TUMANA RESEARCH 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

19. TUMANA RESEARCH Māori ethical frameworks Koru of Māori Ethics – Manuka Henare

20. TUMANA RESEARCH Māori ethical frameworks He Korowai Oranga – Whānau Ora

21. TUMANA RESEARCH Māori ethical frameworks Rangahau Painga – Mason Durie

22. TUMANA RESEARCH Māori ethical frameworks Hōmai te Waiora ki Ahau – Stephanie Palmer

23. TUMANA RESEARCH 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

24. TUMANA RESEARCH Working the Operational Standard for Māori Respect for Persons Māori worldview is not recognised/respected never seek/promote opportunities to incorporate collective views

25. TUMANA RESEARCH 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

26. TUMANA RESEARCH Working the Operational Standard for Māori 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

27. TUMANA RESEARCH 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

28. TUMANA RESEARCH 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

29. TUMANA RESEARCH 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

30. TUMANA RESEARCH 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

31. TUMANA RESEARCH 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

32. TUMANA RESEARCH Ano te ataahua o te nohotahitanga a ngā taina me ngā tuakana i raro i te whakaaro kotahi