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

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.

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

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

“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

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 )

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

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

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)

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

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

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

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

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?