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

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

Operation Standard

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?

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

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

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

Te Tauranga Waka

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

Tikanga collect baseline data understand the representation process

Tikanga empower representatives monitor Operation Standard track progress in annual report

Tikanga reporting on the “special” issues

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

Whakapapa

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?

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