Pū Tai Ora 18 October 2006

1. 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 TUMANA RESEARCH

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 … TUMANA RESEARCH

3. Role of Māori EC membersOperation Standard- Principles • respect for persons • informed consent • privacy & confidentiality • validity • minimisation of harm • justice • cultural/social responsibility • compensation for research participants TUMANA RESEARCH

4. Role of Māori EC membersPū 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 TUMANA RESEARCH

5. Role of Māori EC membersPū 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 TUMANA RESEARCH

6. Role of Māori EC membersHui 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 TUMANA RESEARCH

7. Role of Māori EC membersHui 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 TUMANA RESEARCH

8. Role of Māori EC membersHui 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 TUMANA RESEARCH

9. Role of Māori EC membersHui 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 TUMANA RESEARCH

10. Role of Māori EC membersHui 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 TUMANA RESEARCH

11. Role of Māori EC membersPū 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) TUMANA RESEARCH

12. Role of Māori EC membersHui 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 TUMANA RESEARCH

13. Role of Māori EC membersHui 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 TUMANA RESEARCH

14. Role of Māori EC members TUMANA RESEARCH

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 TUMANA RESEARCH

16. Māori ethical frameworksThe 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 TUMANA RESEARCH

17. Māori ethical frameworksTe Noho Kotahitanga – Hugh Kawharu TUMANA RESEARCH

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 TUMANA RESEARCH

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

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

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

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

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 TUMANA RESEARCH

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

25. Working the Operational Standard for MāoriInformed 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 TUMANA RESEARCH

26. Working the Operational Standard for MāoriPrivacy/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 TUMANA RESEARCH

27. Working the Operational Standard for MāoriMinimisation 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 TUMANA RESEARCH

28. Working the Operational Standard for MāoriJustice • for whom? • how do we acknowledge Māori cultural and intellectual property rights • ToW principles, rights and responsibilities not widely understood/applied TUMANA RESEARCH

29. Working the Operational Standard for MāoriCultural & 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 TUMANA RESEARCH

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 TUMANA RESEARCH

31. Solutions & Re-solutions? cont’dPū 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 TUMANA RESEARCH

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