National Ethics Advisory Committee
Kāhui Matatika o te Motu
There are significant inequities in health status between Māori[1] and other New Zealand populations. Some reasons for these inequities are:
These persistent and significant health inequities have been longstanding and described as a breach of the Treaty of Waitangi, and as avoidable, unethical and unjust. This substantiates a focus on eliminating Māori health inequities and honouring Māori health aspirations in the ethical review of all health research.
All research in New Zealand is of interest to Māori. All studies may produce benefits for Māori, but may also present risks of harm. All research has the potential to support Māori achieve their aspirations. All researchers in New Zealand therefore must consider the degree to which they can contribute to improving Māori health outcomes.
3.1 Researchers should maximise the degree to which their study can contribute to Māori health outcomes.
3.2 Research should include Māori participants unless there is a valid justification where the research excludes Māori.
3.3 Research design must demonstrate cultural rigour in order to meet ethical requirements.
3.3.a Cultural rigour considers, amongst other things, the application of cultural concepts, norms, practices and language in the research process that actively protect Māori individual and collective rights. Cultural rigour can be ascertained by conversations with Māori, especially experienced Māori health researchers who understand the purpose of rigour in research contexts.
3.3.b Researchers must answer certain questions right from the start of developing their study:
3.3.c If the researcher is of non-Māori descent, the researcher must answer these questions first:
3.4 Researchers must act with integrity and transparency when conducting research involving Māori.
3.5 When they are conducting a study with a particular whānau, hapū, iwi, community or organisation, a partnership approach should underpin the development of the research proposal as well as the research design and all elements of its implementation.
3.6 Researchers should consider Māori data sovereignty and its implications for their research.[2]
3.6.a Māori data can include, but is not limited to, data about Māori organisations and businesses, data about or derived from Māori (such as biological samples) that is used to describe or compare Māori, and data about te ao Māori (the Māori world) that emerges from research.
3.6.b Any data collection in relation to Māori should be collected in a way that aligns with the Treaty of Waitangi and Māori fulfilment of their own rangatiratanga, or self-determination. Involvement of Māori in research design, collection, analysis, interpretation, and management of their own data is essential.
3.6.c All researchers must clearly identify the Māori collective (whānau, hapū, iwi, organisation) or the Māori stakeholder group they wish to engage by specific recruitment criteria (eg, ‘Māori men with diabetes accessing diabetes services in X District Health Board’, ‘Māori mothers under the age of 20 living in X city with experience of Y’).
Consultation, in its simplest form, starts with a conversation. An initial conversation can allow researchers to establish rules for engagement, as a first step toward establishing cultural understanding (HRC 2010).
Consulting early can improve the quality of the data ultimately produced in a number of ways (eg, it can result in better recruitment, a more meaningful research question or clearer outcomes). In this way, the results from health research involving robust consultation can contribute to improving the health status of Māori and benefit all New Zealanders.
3.7 In the case of international clinical trials, the protocol is often designed overseas and being applied to a New Zealand context with limited opportunity for alteration. Even so, researchers should make every effort to adapt the protocol, or local study processes, as necessary to the New Zealand context.
3.7.a In the case of international clinical trials, it is expected that engagement with Māori will be achievable at the New Zealand investigator and clinical trial site level[3].
Under the principle of manaakitanga, all health researchers should engage in consultation. Early engagement with Māori health researchers (eg, institutional colleagues), even at the point of the conception of a research idea, can be valuable to research teams, and help them to identify opportunities and challenges in the development phase of a research project. Early engagement can prevent problems further along the research process, including ethical concerns. Māori expertise on Māori methodologies or methods is compulsory.
Conversations with Māori stakeholders open the door for researchers to understand the most effective and efficient pathways for working alongside Māori participants. This can be is as simple as inviting and including Māori colleagues in discussions about the research question, design, governance and conduct, as well as the analysis and dissemination of research findings. While casual engagement with colleagues is often valuable, researchers must take care not to overburden individual Māori colleagues. Institutions should invest in their Maori research capacities to facilitate formal consultation, so that meeting the requirements of engagement and consultation is not overly burdensome. Research projects can contribute, and have contributed, to building Māori research workforce capacity, through training opportunities.
Research involving a process of consultation in which Māori are regarded as equal partners in the research design will provide much greater outcomes than research in which Māori play no part in framing the research question, and especially if the diverse realities of Māori, and Māori opinions, are not reflected in the analysis and research results. Meaningful engagement with Māori involves their active participation, and a research process in which Māori values and views are evident throughout.
Meaningful engagement can evolve into long-term relationships. New Zealand has produced important research involving Māori as participants, as a result of Māori leaders approaching researchers to help them find answers to particular health concerns. Equally, researchers may approach Māori to help them find answers to health problems.
3.8 Researchers should consider the amount of time required for partners/participants to consider their potential involvement in the research, and assess whether they will have a meaningful role. Researchers must ensure they have the appropriate resources (including time) to become familiar with the processes, prospects, risks and benefits of the research proposal with the Te Ara Tika principles in mind.
Different levels of Māori involvement, different research topics and different levels of risk to Māori may require different levels of consultation. The following examples of Māori involvement in research move from the lowest to the highest level of involvement, and set out minimum expectations for engagement with Māori.[4]
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Te Ara Tika principles necessitate sharing the benefits of research.
When researchers are considering their research in terms of its ethics, part of their task is to understand the nature of the potential range of outcomes from that research (risk versus benefit; short versus long term) and how those outcomes will be distributed (among researchers, participants, communities and society).
3.9 Researchers should consider the potential benefits of their research for Māori participants and their communities.
3.10 When considering how Māori can benefit from research, researchers should review the previous incidence, intervention rates, outcomes and prevalence (statistics) of the disorder under study (or treatment indication, if the research is a drug trial) in Māori.
3.10.a Research on many disorders is particularly important in the context of Māori health, while a very few are relatively rare in Māori and have less of an impact on Māori populations. Prevalence is an important factor, but researchers should also consider health outcomes: some disorders may have a low prevalence among Māori, or prevalence equivalent to national prevalence, but worse outcomes.
3.10.b Researchers must be honest and open about all parts of their research, including their publication plans and how they (as researchers) will personally benefit from undertaking the research.
3.11 If research has an impact on Māori health, the research protocol should include information on how researchers will ensure that Māori benefit at least equally (and how Māori will gain a greater benefit than the general population will if Māori are to gain more benefit than the general population.
3.11.a Researchers should consider what extra measures they can put in place to ensure that Māori participate (eg, iwi consultation, inclusion of Māori researchers, active follow-up), to involve them in interpreting results or study findings, and to share their findings with those consulted in an appropriate way.
[1] Māori are the indigenous people of New Zealand. Globally, nations across the world are increasingly recognising indigenous rights; key guideline documents on this subject emphasise self-determination; the protection of heritage, indigenous knowledge, plants and genetic material; and the right for indigenous people to ‘maintain and strengthen their distinct political, economic, social and cultural characteristics’ (as stated in the United Nations Declaration on the Rights of Indigenous Peoples).
[2] See the website of Te Mana Raraunga(external link), the Māori Data Sovereignty Network.
[3] A trial site or ‘locality’ is an organisation responsible for a hospital, health centre, surgery, or other establishment or facility at or from which the procedures outlined in the protocol of a study are to be conducted.
[4] See Hudson et al 2010 for discussion of what each level of consultation involves, and the questions that researchers should consider. See also ‘Table 1’ of the joint CCDHB and ADHB Framework for Māori Review of Research in District Health Boards [PDF, 977 KB](external link) and the University of Otago Research Consultation with Māori Policy(external link)
[5] Researchers who do not have access to institutional Māori review processes can contact individual Māori researchers via the Māori and Indigenous Researcher Directory Te Hononga Pūkenga(external link).
