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What is the role of Māori EC members? What are the issues for Māori? What should a Māori ethics ... - page 9 / 32

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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

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