Maori Bioethics

Tikanga Maori

the cultural norms that govern behavior

Maori customs and customary values and practices

Why are Maori Ethical (Tikanga) Frameworks Important?

necessary: informs research in Aotearoa, some are implemented as policy

useful: underpin guidelines for best practice research with Maori communities

valuable to know: insights into the ‘why’ of Maori culture

Vision Matauranga

NZ government science policy framework

mission is to unlock the science and innovation potential of Maori knowledge, resources, and people for the benefit of all New Zealanders

all MBIE-funded research applicants are encouraged to have VM included

HRC has Maori health advancements guidelines

Commonly Used Maori Values in Ethical Frameworks

whakapapa: genealogy

mauri: life essence

mana: power/authority

kaitiakitanga: guardianship

matauranga: indigenous knowledge

Development and Application of Te Aroturuki Framework for Engaging Maori Communities

Te Aroturuki is a group of maori researchers with expertise in Maori language, culture, and custims

established via formal three-way agreement between NZFRI, Te Aroturuki members, and leaders of local Maori sub-tribe

primary goal is to develop an effective Maori-values based process for interactions between biotechnologists and Maori communities

Four Stages of Te Aroturuki

preparation of information to present in support of the application and evaluation of readiness to engage

dialogue with indigenous communities regarding the proposed research

response to diaologue, including modifications

a monitoring and evaluation phase — during and after

Key Features of Te Aroturuki

applied at a pre-proposal stage

pre-application dialogue used to evaluate researcher’s readiness for engaging

use of Maori adviser/facilitator

assumes equitable power and knwoledge status and mutual respect

proviision of web-based toolkits for researchers

Case Study: Transcriptomics of Kauri

Kauri are endemic to NZ, immense importance to Maori

threatened by phytophthora agathadicida

proposed transcriptomics of phytophthora-infected kauri to identify indicators of resistance

MPI co-funding required approval from multiple Maori entities

PW and Matua Kevin Prime assisted as facilitators to evaluate research and researchers from a Maori values perspective

outcomes of implementing TAP:

researchers honestly self-reflected on primary motivators

established basis for positive relationships between researchers and communities including trust and familiarity

further research discussed and operationalized

approvals from TWE and iwi indicated the application of a values-based framework worked

Frameworks

a practical orientation toward guiding decision-making

take culturally grounded values and operationalize them for research contexts, generating questions, etc.

Te Ara Tika: a Framework for Maori Research Ethics

purpose: explain Maori ethical concepts, support decision making, identify ways to address Maori concerns, clarify the kaitiaki role of Maori ethics committee members

grounded in tikanga Maori but integrates treaty of waitangi principles and western ethical principles

a progressive framework, minimim standard, good practice, and best practice for each principle

The Four Tikanga-Based Principles

whakapapa: quality of relationships between researchers and Maori communities and the structures that support them

tika (research design): whether the research is right, valid, and responsive to Maori

manaakitanga (cultural and social responsibility): treating participants with dignity, incorporating Maori values, ensuring cultural safety

mana (justice and equity): mana is a spiritual power that manifests as authority, presige, and control; tapu restructs contact with things carrying mana; operationalized as questions of power, risk distribution, and whose interests the research serves

each operates at three progressive levels: minimum standard — good practice — best practice

Whakapapa

minimum: constructive critique of the project, clear information sheets, samples used only for stated purposes, results reported back

good practice: substantial engagement beyond consultation, participation aligns with Maori aspirations, culturally safe consent processes

best practice: Maori take a governance/guardianship role, transparaency, good faith, and fairness, meaningful input into the shape, conduct, and dissemination of research

Tika

minimum: Maori may or may not be directly involved, their rights are protected, researchers consider relevance to Maori goals, appropriate recruitment

good practice: Maori are significant participants in various roles including the research team, involved in design, analysis, and dissemination

best practice: research is designed by, conducted by, and primarily benefits Maori, Maori define the research problem, kaupapa Maori methodolgies used

Manaakitanga

minimum: inherent dignity acknowledged, access to appropriate advice, privacy and confidentiality applied appropriately

good practice: collective participation in establishing goals and benefits, Maori values and protocols incorporated, whanau support available

best practice: empowerment and trust, spiritual integrity recognized, Maori philosophy informs the project, whakawatea may be incorprated

Mana

minimum: particiipants informed of risks to individual and collective mana, fair distribution of risks, informed consent, role of koha understood

good practice: iwi/hapu with regional authority engaged at design stage, collective consent where risks to the collective are serious, benefit-sharing explored

best practice: power and control shared, iwi intellectual property acknowledged, data ownership addressed, guardianship responsibilities agreed

Te Mata Ira: the Cultural Foundation for Genomic Research

guidance for genomic research with Maori, built on Te Ara Tika

genealogy and interconnection is embodied in DNA; storage and use of tissue for genomic research is culturally significant

precious and sacred: tissue, DNA, and genomic data are all taonga; they carry mana and are tapu, meaning active protection

conditional gifting: tissue is gifted with conditions; the gift carries the responsibility to look after it

Three Kawa for Genomic Research

level of comfort: participants and communities must feel comfortable with the research; comfort changes over time, requiring ongoing engagement, support, and communication

level of control: participants retain meaningful control; influence tends to decrease after consent, so active mechanisms are needed

level of integrity: the systems supporting research must operate with transparency and accountability to maintain trust

Tikanga for Tissue: The Logic of Gifting

sharing the gift: the point of consent, establishes a relationship and expectations of reciprocity; involves both physical consent and spiritual consent

the spirit of the gift: ongoing use of tissue/DNA/data; responsibility to honor the spirit of the gift; a kaitiaki supports decision making, participants receive regular updates

return of the gift: when the project ends, formal reporting of all uses and outcomes; re-consent for future use or exit from the relationship

Te Mata Ira: Key Questions at Each Phase

consultation (pre-research engagement with communities as stakeholders): kara (whakapapa), governance (mana), purpose (tika), benefit (manaakitanga)

research (the active research period, concerned with how participants and samples are treated): tikanga (whakapapa), consent (mana), methods (tika), communication (manaakitanga)

transformation (post project, impact of research on communities): accountability (whakapapa), kaitiaki (mana), translation (tika), education (manaakitanga)

Te Mata Ira Framework: Three Phases Applying Te Ara Tika

Consultation: Kawa (whakapapa), Governance (mana), Purpose (tika), Benefit (manaakitanga)

Research: Tikanga (whakapapa), Consent (mana), Methods (tika), Communication (manaakitanga)

Transformation: Accountability (whakapapa), Kaitiaki (mana), Translation (tika), Education (manaakitanga)