Strengthening Māori Research Ethics through NEAC’s Ethical Guidelines for Health and Disability Research

About NEAC

  1. Kāhui Matatika o te Motu (National Ethics Advisory Committee (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.
  2. NEAC’s Ethical Guidelines for Observational Studies and Ethical Guidelines for Intervention Studies set out the ethical standards for health and disability research in New Zealand. All researchers are required to meet these standards.

Objectives of the guidelines review

  1. NEAC is undertaking a comprehensive review of its Ethical Guidelines for Observational Studies and Ethical Guidelines for Intervention Studies. The objectives of the review are to ensure the guidelines are fit for purpose and consistent with other relevant guidance.
  2. A significant proposed change is to set out more clearly each of the ethical standards. The standards will use directive language (such as “must” and “should”) to be clearer for researchers. Each standard will be followed by a section describing and discussing its application (including relevant examples, where appropriate). The discussion of each of the standards and their application will link back to the relevant ethical value(s).
  3. There is an opportunity to strengthen the guidelines to ensure a greater focus on Māori research ethics and improving Māori health and wellbeing.

Context

  1. NEAC acknowledges the Treaty partnership in New Zealand. It is NEAC’s view that the Treaty relationship presents an opportunity to co-design an advanced national health research ethics platform that encompasses two world views – conventional ethics as well as tikanga Māori (indigenous ethics).
  2. The new guidelines build on the work of others in developing Māori research methodologies, guidelines for research involving Māori, and guidelines for Māori research ethics.

Māori values

  1. It is proposed that the new guidelines place Māori values (tika, manaakitanga, whakapapa, mana) alongside the Western bioethical framework (beneficience, non-maleficence, autonomy, justice).

Tika

  1. Tika refers to what is right and what is good for any particular situation. In the context of Māori research ethics, tika relates to the design of a research project, and whether the research achieves proposed outcomes, benefits participants and communities, and brings about positive change.
  2. Tika requires respectful relationships with Māori and mana whenua in all research projects, whatever approach the research team decides to use.

Manaakitanga

  1. Manaakitanga involves caring for others, nurturing relationships and being careful in the way others are treated. Aroha (respect, love), generosity, sharing and hosting are essential parts of manaakitanga, as is upholding the mana of all parties.
  2. In the context of Māori research ethics, manaakitanga is associated with cultural and social responsibility and respect for persons. This value requires an understanding of the appropriateness of privacy and confidentiality to safeguard any harmful effects from disclosure of information, the importance of collective participation in establishing the goals and benefits of a research proposal, and empowering research partnerships.
  3. Researchers are expected to learn as well as gather data in Māori research, to collaborate and to give back to the community (for example, through koha and sharing of ideas).

Whakapapa

  1. Within the context of decision-making and Māori research ethics, whakapapa refers to the quality of relationships that are developed, why these relationships have been formed, and the structures or processes that have been established to support these relationships.
  2. Ethical issues that whakapapa aims to address include concerns about the quality of any consultation or engagement process with Māori, and monitoring the progression of relationships through various stages of the research, from beginning to end.

Mana

  1. Mana refers to power, prestige, leadership and authority bestowed, gained or inherited individually and collectively. Mana can influence the balance and management of leadership, interpersonal and inter-group relationships so that knowledge is shared and the mana of participants is upheld.
  2. In the context of Māori research ethics, mana relates to equity and distributive justice in terms of the potential or realised risks, benefits and outcomes of the research. It also acknowledges issues of power and authority in relation to who has rights, roles and responsibilities when considering such risks, benefits and research outcomes. Finally, mana ensures that appropriate aspects of tikanga Māori are upheld within the research process, and that local protocols are respected.

Relationships

  1. The principles of partnership, participation and protection implicit in the Treaty should be respected by all researchers.
  • Partnership: working together with iwi, hapū and whānau and Māori communities to ensure Māori individual and collective rights are respected and protected in order to achieve health gain.
  • Participation: involving Māori in the design, governance, management, implementation and analysis of research, particularly research involving Māori.
  • Protection: actively protecting Māori individual and collective rights, and Māori data, cultural concepts, norms, practices and language in the research process.

Research design

  1. NEAC’s view is that all health and disability research conducted within New Zealand will impact on Māori and there needs to be a stronger focus, across all research, on improving Māori health and wellbeing.

Consent

  1. When research focuses on a whānau, hapū or iwi, it is normally appropriate for the researcher to consult with the group or representatives of the group. If a group agrees to the research, the agreement or refusal of individuals to participate has to be respected. A group’s right to decline to have research proceed within their whānau, hapū or iwi if the research is unacceptable to them is paramount.

Related work

  1. NEAC is mindful of other work that will impact on New Zealand’s research environment and the opportunities this work might provide for addressing issues related to Māori health research ethics. This includes, for example, the New Zealand Health Research Strategy, the new therapeutic products regulatory regime and the Data Futures Partnership’s work on developing guidance for trusted and ethical data use.
  2. In October 2016, He Tangata Kei Tua: Guidelines for Biobanking with Māori Tissue[1] and Te Mata Ira: Guidelines for Genomic Research with Māori[2] were published.
  3. The Health Research Council Māori Health Committee is developing a strategic plan and this is expected to be completed in early 2017. Following this, the Committee may review various guidelines including Te Ara Tika Guidelines for Māori research ethics: A framework for researchers and ethics committee members[3].

Next steps

  1. NEAC would welcome your input as the work on the new guidelines progresses. If you would like to be involved, please email NEAC ().
  2. NEAC expects to undertake public consultation on the new guidelines in early 2018. At that time the draft new guidelines will be available on NEAC’s website (

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

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[1] Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, Toki V, Uerata L, Wilcox P. 2016. He Tangata Kei Tua: Guidelines for Biobanking with Māori. Hamilton: University of Waikato

[2] Hudson M, Beaton A, Milne M, Port W, Russell K, Smith B, Toki V, Uerata L, Wilcox P. 2016. Te Mata Ira: Guidelines for Genomic Research with Māori. Hamilton: University of Waikato

[3] Hudson M, Milne M, Reynolds P, Russell K, Smith B. 2010. Te Ara Tika: Guidelines for Māori Research Ethics: A framework for researchers and ethics committee members. Auckland: Health Research Council