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What is the role of Māori EC members? What are the issues for Māori? What should a Māori ethics ... - page 27 / 32

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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

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