2. Tikanga Maori in the Laboratory: Shaping Culturally Safe & Respectful Scientific Practices
Huntington’s disease and post-mortem human brain tissue studies
The being Indigenous – working with human tissue dilemma
Addressing the dilemma: Do research that enhances tapu and mana!
Tapu
Whanau
Tikanga Maori

3. Huntington’s Disease Inherited neurodegenerative disease
4 - 6 people in 100,000. Maori statistics unknown
Autosomal dominant (50% chance)
Symptoms: movement, personality & cognition
Genetics are well characterised (HDCRG, 1993)
Severity of symptoms correlates to extent of mutation
Inevitably ends in death
Therapies treat the symptoms not the cause
Unknown how and why the defective gene causes death to a specific subpopulation of cells in specific areas of brain and not to others.

4. Why use post-mortem human tissue?
Immuno and Molecular Biology studies: Where? How much? How it works?
Growing cells from post-mortem brain tissue to study disease processes
The best model ethically possible
Studying human brain tissue allows us to study the actual processes and structures that change in disease
Whakapapa of human brain bank: Consent & Respect
Diagnostic… Pathology
Whanau get last say
Disposal of tissue… Cremation and return to Papatuanuku

7. The Being Indigenous - Working with Human Tissue Dilemma
Historical Trauma
Medical: Greenlane organ scandal
Anthropological: Mokomokai & Koiwi
Undoing historical injustices involves acknowledgement and prevention
CONSENT & RESPECT
Tapu
The scientific worldview does not account for spirituality
In Indigenous worldview physical and spiritual worlds are continuous
He tino tapu te upoko!
Working with human brain tissue can be perceived as a breach in tapu
What is tapu? Complex concept…
Extrinsic tapu: Tapu as dignity and worth (whakapapa)
Intrinsic tapu: Tapu as being (existing)
Extensions of tapu: Tapu as restrictions – To protect the being. Informs Tikanga

8. “Tapu has to be held in the highest esteem
“Tapu has to be held in the highest esteem. You see in people it is not in the hands: it is in the head, in the crown. In the old days, you could never touch the head. We take it seriously, knowing that it survives… We may put on Pakeha clothes, we may eat Pakeha food. But deep inside we are Maori at heart and tapu will stay with us forever.”
Te Uira Manihera. in Te Ao Hurihuri, 1992
“Tapu is the web of observances and rules that overlays and binds this world to the next, ensuring consistency and safety for those who adhere to its rules of conduct and respect its understanding”
James Irwin, 1984

9. Addressing the dilemma: Do research that enhances tapu and mana!
A vision: to do research that enhances tapu and mana of all involved (dignity and worth; being; restrictions; spiritual authority)
Tika, Pono, Aroha (integrity, honesty, respect)
Tapu restrictions are there to protect the tapu as being. Use tikanga - whakanoa to minimise harm
“Spiritualism is really nothing more than a conscious attempt to honour, to respect, to acknowledge that quintessential, essential character of life.”
Gregory Cajete (Tewa American Indian) in Royal, 2002
(Pa Henare Tate, Dynamics of Whanaungatanga;
Royal (2002) Comparative Study of Indigenous Worldview )

10. Whanau are central to Maori Cosmology and Culture
Whanau and iwi involvement gives research deeper meaning, relevance and inspiration
Visited tribal elders to ask their permission
The blessing of the people…
Suggested hui between my iwi Ngati Rangitihi, members of my research group and Maori HD whanau
Hui with Taranaki whanau
It was my privilege to attend the hui (with Ngati Rangitihi). I realized I was in the midst of something quite extraordinary. Throughout the day I was feeling a very strong emotion, and it was not until I had time to reflect in the van on the way home that I was able to give it a name. It was peace. A peace within me. I was fortunate in that it lasted for several days. It was an exceptional experience.
Jocelyn Bullock, Kaitiaki Neurological Foundation Human Brain Bank
It was a most wonderful day – Mum and I are still talking about it – very precious, informative, positive and love-filled.
Orini Marr, Ngati Rangitihi (her mother has Parkinson’s disease)
Each hui gets more positive, whanau are starting to korero and be more open
Donna, Taranaki whanau with HD

12. Tikanga Maori Customary practices, values and knowledge
Practice of observing the rules of tapu (Spiritual and practical/cleanliness)
Customary law: Social control/Moral code
Ritual or Protocol
Identity: Differ tribally
Respecting others: Kaua e takahia te mana o te tangata
Kuamatua & Kuia: Guardians of Tikanga

13. How can we develop appropriate tikanga for use in the laboratory?
By using Maori Core values to inform tikanga (practices)
Kaupapa Maori Methodologies recognise that Maori values and ways of knowing underpin our cultural wellbeing and are crucial for Maori survival.
Maori values include:
Tapu (sacred, with restriction)
Mana (spiritual authority)
Mauri (life force)
Whanaungatanga (kinship)
Manaakitanga (kindness & hospitality)
Tika (right, integrity)
Noa (without restriction)
Pono (Integrity, truth, honesty)
Aroha (Love, respect, compassion)
Wairuatanga (spirituality);
Kotahitanga (unity, wholeness);
Kaitiakitanga (guardianship, protection)
Tikanga Maori, Hirini Moko Meads (2003); Koru of Maori Ethics, Henare (1999)

14. Tikanga Maori for use in the laboratory
Practicality. Actions speak loader than words.
Whakanoa: Karakia, waiata, wai… kai Whakamoemiti whanau and Atua Karakia from tangi. Haere, haere, haere… Karakia about Te Korekore, Te Po, Te Ao Marama
Ongoing process
Kaitiakitanga of human tissue bank
Building and nurturing reciprocal & respectful relationships with Maori: Consultation with whanau, hapu, iwi Maori student recruitment
Remain open and teachable about this process

15. Importance of developing appropriate Tikanga Maori for use in the laboratory
Reclaiming science for Maori: Participate & shape research
Change the culture of scientific research
To acknowledge tapu and wairuatanga. Tinana and hinengaro are not separate from wairua.
For cultural safety. Remove tapu restrictions
Using Tikanga Maori in the lab affirms the importance of Maori practices in contemporary society
Acknowledges that Maori culture evolves, it is living, yet there are some core values that will always remain important
To create space and practices that allow Maori stories and voices to be heard

16. Working with post-mortem human tissue is necessary to elucidate disease processes
The Being Indigenous - Working with Human Tissue Dilemma: historical trauma, (lack of consent and respect); tapu
Enhancing tapu and mana through doing research with integrity, honesty and respect
Whanau interactions
Developing Tikanga Maori in the laboratory

17. Acknowledgements Prof Richard Faull Prof Mike Walker
Prof Mike Dragunow
Dr Waiora Port
Eru Thompson
Verna, Doug & Leah
Uncle Tame Minarapa
Taranaki whanau and Rondon whanau
Ngati Rangitihi
Naida Glavish and Pearl Haereroa
MAI ki Tamaki
Faull and Dragunow Research Groups
Research is funded by:
Health Research Council of New Zealand
University of Auckland
Neurological Foundation of New Zealand
Nga Pae o te Maramatanga
Lynette Sullivan HD research fund

18. Discussion
How can scientists develop research that is culturally safe and appropriate for Indigenous people?
What are some ways academics and researchers can make space for Indigenous values and voices to be affirmed in our research and in our institutions?