1. Pūtaiora Writing Group
Te Tauranga Waka
An action-plan for addressing Māori concerns about the process for ethical review of research involving human beings
Pūtaiora Writing Group
May 2009

2. NZ’s system of ethical review
international codes & declarations
statutory/constitutional provisions
ToW, Human Rights Act, Privacy Code
network of advisory/decision-making groups
HRCEC, GTAC, SCOTT, DMCC, ANCTR, ECA, ACART, ECART, NEAC,HDECs (x7)
multiple terms of reference
Operation Standard
guiding/ethical principles
additional issues for Māori

3. Operation Standard

4. Reassurances Treaty principles protection of Māori cultural concepts
collective consent, tikanga, whānau
informed consent
in a language that is understood
valid contribution to knowledge
do no harm, hopefully do some good?

5. Protection & Participation (HDECs)
Māori members
mana whenua/mataawaka relationships
Pūtaiora annual hui
Section F
HRC guidelines, impact on Māori, consistent with Treaty, evidence of consultation
Locality Assessment
progress/end of study reports
annual reports
how many read HRC guidelines, appropriate consultation, process/mechanisms for consultation

6. Protection & Participation (ECART)
Māori members
research applicants
how are cultural issues addressed including ToW in all aspects of research?
medical specialists for donors/recipients
how will different ethical, spiritual, cultural perspectives in society, including the needs & beliefs of Māori be considered and treated?
counsellors
how was service culturally appropriate
how have whakapapa, and the needs, values, beliefs of Māori been considered and managed
key person statement eg kaumatua
annual report
ethnicity of donors/recipients having fertility treatment
register

7. Why a Māori Ethics Framework?
representation
self-nominating
appointed as individuals not collective voice
burden/responsibility
consultation
mana whenua not engaged
DHB/university based
credibility, reliability, consistency
inadequate Section F
over-ruled by other principles
disempowered by diversity
expedited review (14-33%)
informed consent
no mātauranga Māori
consent is not consent at all if not in language that can be understood
transgression
data collection
not informing process of representation
not collecting key data on responses to cultural issues
reporting
no dissemination
not monitoring
no understanding

8. Te Tauranga Waka

9. Mana
“who” has the legitimate power and authority to represent Māori positions
consultation groups?
Māori EC members?
“what” do they represent
mātauranga Māori?
kaitiakitanga?
what is the Māori view on kaitiakitanga?
“how” do we empower the representation process

10. Tikanga
collect baseline data
understand the representation process

11. Tikanga empower representatives monitor Operation Standard
track progress in annual report

12. Tikanga
reporting on the “special” issues

13. Whakapapa rationale, purpose for being analytical tool
monitors progress and change
layer upon layer of information
a framework for gathering, organising, making sense of
the weaving information together
generating knowledge, wisdom, understanding
whakapapa is:
process of analysis,
creation of mātauranga Māori
establishment of a platform for knowing and understanding
the pathway that will lead to kaitiakitanga
completely and utterly dependent on breadth and quality of information
Māori must actively and pro-actively engage in weaving together the various strands of information that are available

14. Whakapapa

15. Whakapapa “who” is weaving the whakapapa together?
Māori Advisory Committee?
Māori Commissioner?
National Māori Ethics Committee?
delegated Māori leaders?
“what” are the benefits and implications?
capacity to generate knowledge about kaitiakitanga
meaningfully consider, respond to, provide leadership on wider, more complex issues eg
empowerment of the representation process
tikanga
consensus statements
mātauranga Māori
eco-connectedness, protection of species, synergistic relationships
risks and benefits
“how” is kaitiakitanga sustained?

16. Te Tauranga Waka empowering the representation process
gathering and reporting relevant data
investing in analysis to generate knowledge