Strengthening Māori research ethics through NEAC’s ethical guidelines Dr Maureen Holdaway Dr Kahu McClintock National Ethics Advisory Committee

About NEAC NEAC is an independent advisory committee to the Minister of Health NEAC’s statutory functions include determining ethical standards across the health and disability sector NEAC’s ethical guidelines for observational and intervention studies set out the ethical standards for health and disability research in New Zealand All researchers are required to meet these standards

Guidelines review NEAC is undertaking a comprehensive review of its ethical guidelines for observational and intervention studies Objectives – ensure fit for purpose and consistent with other guidance Clear ethical standards (“must” and “should”) followed by description of application Greater focus on Māori research ethics and improving Māori health and wellbeing

Treaty of Waitangi Co-design an advanced national health research ethics platform that encompasses two world views Conventional ethics Tikanga Māori (indigenous ethics) Build on work of others – Māori research methodologies, guidelines for research involving Māori, and guidelines for Māori research ethics

Māori values Tika Manaakitanga Whakapapa Mana

Māori values Are tika, manaakitanga, whakapapa and mana the right values? Are there others that should be included? How can we ensure the values are visible throughout the guidelines?

Relationships Partnership – working together with Māori to ensure Māori individual and collective rights are respected and protected Participation – involving Māori in design, governance, management, implementation and analysis of research Protection – actively protecting Māori individual and collective rights, and Māori data, cultural concepts, norms, practices and language in the research process

Relationships What should the guidelines say about consultation with Māori and governance arrangements? What are the minimum ethical standards for consultation and governance?

Research design All health and disability research conducted in New Zealand will impact on Māori There needs to be a stronger focus, across all research, on improving Māori health and wellbeing

Research design What should the guidelines say about including Māori as participants? What minimum ethical standards are required to ensure research contributes to improving Māori health and wellbeing?

Consent When research focuses on a whānau, hapū or iwi, the researcher should consult with the group or representatives of the group If the group agrees to the research, consent of individuals is still required and must be respected If the group does not agree with the research, then the research must not proceed

Consent What should the guidelines say about collective consent? What are the minimum ethical standards for collective and individual consent?

NEAC contacts Website: http://neac.health.govt.nz/home We would welcome your input on the new guidelines and expect to undertake public consultation in early 2018 Website: http://neac.health.govt.nz/home Email: neac@moh.govt.nz

Bibliography National Ethics Advisory Committee. 2012. Ethical Guidelines for Observational Studies: Observational research, audits and related activities. Revised edition. Wellington: Ministry of Health National Ethics Advisory Committee. 2012. Ethical Guidelines for Intervention Studies: Revised edition. Wellington: Ministry of Health Atatoa-Carr P, Hudson M, Kingi T K, Moore A. November 2012. Āhuatanga ū te tika me te pono mō te Rangahau Māori, Māori Research Ethics: An overview. National Ethics Advisory Committee