Te Ara Tika
Guidelines for MÄori research ethics:
A framework for researchers and ethics committee members
The PÅ«taiora Writing Group
Mr Maui Hudson Ms Moe Milne
Dr Paul Reynolds Dr Khyla Russell Dr Barry Smith
Published by the
Health Research Council of New Zealand
on behalf of the PÅ«taiora Writing Group
ISBN: 978-1-877495-03-8
In preparing this document the PÅ«taiora1 Writing Group wish to acknowledge Dr Stephanie Palmer,
and the support and encouragement of the National Ethics Advisory Committee (NEAC) and, in particular,
the input of Dr Polly Atatoa-Carr, the Health Research Council of New Zealand (HRC) and NgÄ Pae o te
MÄramatanga, The University of Auckland.
1 PÅ«taiora is the name used for meetings held by the MÄori members of ethics committees
Table of Contents
Introduction
1
Context
1
Tikanga
2
Purpose
2
Background to the guidelines and the framework 3
Whakapapa – He aha te whakapapa o tēnei kaupapa? 6
Tika – Me pehea e tika ai tēnei kaupapa? 8
Manaakitanga – MÄ wai e manaaki tÄ“nei kaupapa? 10
Mana – Kei a wai te mana mŠtēnei kaupapa? 12
Implementation
18
Glossary of MÄori terms
19
Appendix A: Timeline of developments in MÄori research ethics 20
Appendix B: MÄori Ethical Frameworks 22
Appendix C: Characteristics of MÄori research 23
List of Figures
Figure 1: The roles and responsibilities of MÄori ethics committee members 3
Figure 2: MÄori ethical framework
4
Figure 3: Whakapapa
6
Figure 4: Tika
8
Figure 5: Manaakitanga
11
Figure 6: Mana
12
List of Tables
Table 1: Assessing appropriateness of MÄori consultation 17
Guidelines for MÄori research ethics:
A framework for researchers and ethics committee members
Me whakatika te matatika ki roto i te tikanga kia tika ai
Te Ara Tika 1
Introduction
This document outlines a framework for addressing MÄori ethical issues within the context of
decision-making by ethics committee members. It draws on a foundation of tikanga MÄori (MÄori protocols
and practices) and will be useful for researchers, ethics committee members and those who engage in
consultation or advice about MÄori ethical issues from a local, regional, national or international perspective.
Context
Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key
behaviours, processes and methodologies used in research. International codes of ethics such as the
Nuremburg Code (1947)2, the Helsinki Declaration (1964)3, the Belmont Report (1979)4 and, more recently, the UNESCO
Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards
and professional expectations for researchers.
These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or
experiences for participants and their communities. Despite formal processes and codes of ethics there is
ongoing evidence of unethical research practice which highlights the importance of the researcher’s own
credibility, trust, honesty and integrity vis-Ã -vis6 the research project and participants.
Over the years MÄori have contributed to the critiques of research practice and advocated for the inclusion of
tikanga MÄori as part of formal ethical decision-making processes (Appendix A). There are a range of
models of MÄori research ethics which guide researchers and ensure that tikanga and cultural concepts are
acknowledged (Appendix B).
The Treaty of Waitangi principles of partnership, participation and protection provide a framework for identifying
MÄori ethical issues in terms of; rights, roles and responsibilities of researchers and MÄori communities; the
contribution that research makes towards providing useful and relevant outcomes; and addressing inequalities. All
research in New Zealand is of interest to MÄori, and research which includes MÄori is of paramount
importance to MÄori.
In a research context, to ignore the reality of inter-cultural difference is to live with outdated
notions of scientific investigation. It is also likely to hamper the conduct of research, and limit the
capacity of research to improve human development7.
2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
http://ohsr.od.nih.gov/guidelines/nuremberg.html.
3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
amended by the 59th WMA General Assembly, Seoul, October 2008.
4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
Behavioural Research,
5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
Scientific and Cultural Organisation (UNESCO) (2005).
6 In relation to
7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
and Torres Strait Islander health research. Canberra: 24.
2 Te Ara Tika
Tikanga
The primary indigenous reference for MÄori values and ethics are the creation stories which highlight
specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
kawa (primary values) and provide the foundation for the establishment of tikanga.
Ethics is about values, and ethical behaviour reflects values held by people at large. For MÄori, ethics is about
‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
(justice and equity, reflected through power and authority). As the environment changes or new situations arise,
tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
interface for accessing repositories of cultural knowledge and experience that can be used to inform
ethical deliberations. Tikanga also provides a framework through which MÄori can actively engage with
ethical issues and consider the effect research may have on their values or relationships.
Purpose
Articulating the ethical dimensions of tikanga as they relate to particular research proposals is
a necessary step to support MÄori members of ethics committees to fulfil their kaitiaki (guardian/advocate)
responsibilities. It should also be of assistance to ethics committees in the course of the ethical
deliberations and researchers more generally as a guide to MÄori ethical understandings and perspectives. It
will improve the capacity of key personnel within the system of ethical review to respond more appropriately to
MÄori issues and, in doing so, enhance MÄori communities’ confidence and trust in the decisions made by both
institutional and health and disability ethics committees. In summary, this framework has four main objectives:
• to explain key ethical concepts for MÄori;
• to support decision-making around MÄori ethical issues;
• to identify ways to address MÄori ethical concerns, and
• to clarify the kaitiaki roles of MÄori ethics committee members.
There have been consistent messages about the dual responsibilities of MÄori ethics committee members. As
defined by the Ministry of Health’s Operational Standard for Ethics Committees (2006)9 the MÄori ethics
committee member sits alongside other members of the committee to implement the principles of ethical review.
8 Te Puni Kokiri (1994). Health sector ethics: Nga tikanga pono wahanga hauora: Mechanisms for MÄori into ethical
review, Wellington, New Zealand, Ministry of MÄori Development.
9 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry
of Health.
Te Ara Tika 3
In addition, whÄnau/hapÅ«/iwi (family/kinship group/tribe) expect MÄori members of ethics committee to act as
kaitiaki by understanding MÄori ethical concerns, advocating for MÄori ethical issues, and protecting MÄori interests.
Principles of ethical review
Kaitiaki (brave, competent
and capable)
Cultural/intellectual property rights, Te Ao MÄori (MÄori world), the right to participate in society as MÄori, whÄnau
ora (family health)
Figure 1: The roles and responsibilities of MÄori ethics committee members
Background to the guidelines and the framework
The framework presented in this guideline recognises the broad range of ethical issues identified in
previous documents, particularly in the context of health research. The main principles are drawn from tikanga MÄori
and its philosophical base of mÄtauranga MÄori (traditional knowledge), but also integrate understandings from
the Treaty of Waitangi, indigenous values and Western ethical principles.
This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
not only its ability to identify risks but its potential to enhance relationships through the creation of
positive outcomes for MÄori communities. Concepts of justice and reciprocity are important for identifying
tangible outcomes for all parties and supporting more equitable benefit sharing.
The framework also advocates for constructive relationships and acknowledges the roles, relationships and
responsibilities each party has in the process of engagement.
4 Te Ara Tika
The framework considers that both the research design and the cultural and social responsibility of the
researchers have an immediate influence on the likely outcomes of the research project and should be considered during
ethical deliberations.
Figure 2: MÄori ethical framework
The MÄori ethics framework references four tikanga based principles (whakapapa (relationships), tika
(research design), manaakitanga (cultural and social responsibility), and mana (justice and equity) as the
primary ethical principles in relation to research ethics. Other ethical concepts and principles are
located within this framework and the ethical issues within each segment are identified and cross-referenced to
the Ministry of Health’s Operational Standard for Ethics Committees10.
Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
researchers before ethics committee members consider ethical approval for the research project. The middle quadrant
refers to good practice which indicates a more MÄori responsive approach to the research project. Best practice
extends the ethical consideration to align with expectations of behaviour within Te Ao MÄori.
The axis between the segments provides further opportunity to link the ethical issues to the rights, roles and
responsibilities associated with the Treaty of Waitangi, the principles themselves (partnership, participation
and protection), a risk/benefit/outcome continuum, and the MÄori values of whakapono (faith), tÅ«manako
(aspirations) and aroha (awareness).
10 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry of Health.
Te Ara Tika 5
The process of ethical review can be thought of in terms of tapu (restricted) and noa (unrestricted).
The concept of kia tūpato (to be careful) becomes the starting point for considering the value or potential
benefit of a research project. Kia Äta-whakaaro (precise analysis) and kia Äta-korero (robust discussion)
of the practical/ethical/spiritual dimensions of any project is necessary to provide a foundation to kia
Äta-whiriwhiri (consciously determine) the conditions which allow the project to kia Äta-haere (proceed with
understanding).
TAPU€ kia tūpato € Āta – whakaaro € Āta – korero €
Āta - whiriwhiri € Āta – haere € NOA
RESTRICTED € careful consideration € precise analysis € robust discussion € determine these conditions € proceed with
understanding € UNRESTRICTED
6 Te Ara Tika
Whakapapa – He aha te whakapapa o tēnei kaupapa?11
Whakapapa is used to explain both the genesis and purpose of any particular kaupapa (topic/purpose).
Whakapapa is an analytical tool for not only understanding why relationships have been formed but
also monitoring how the relationships progress and develop over time (mai i te whai ao ki te ao mÄrama).
Within the context of decision- making about ethics, whakapapa refers to quality of relationships and the
structures or processes that have been established to support these relationships. In research, the
development and maintenance of meaningful relationships between researcher and research participant
forms another axis of consideration for evaluating the ethical tenor of a research project and its associated activity.
Figure 3: Whakapapa
Minimum standard: Consultation
An element of aroha (care) or aro ki te ha (awareness) involves acknowledging the essence of the environment within
which a person operates. In a traditional context, a person going fishing or diving might be cautioned with
the phrase ‘Kia aroha ki a Tangaroa’ (to be careful and aware of the potential dangers in the sea). Within this
guideline we use the notion of aroha as the protective element, a basic caution relating to the risks of
engaging in research and to consider ways in which they might be mitigated.
11 What is the genesis of this project?
Te Ara Tika 7
Consultation12 13 ensures that there has been a constructive critique of the proposed project and its
potential impact on MÄori. It also provides an opportunity for the community to consider the track
record of the researcher. Consultation assists with the development of clearly written information sheets which
specify that samples will only be used for the purpose for which they are taken14, provide a mechanism for reporting
back results to appropriate parties15 and allow issues regarding the research scope and agenda16 17 to be discussed.
These are considered minimum requirements and should be reflected in the locality assessment and section F of the
ethics application.18
Questions asked should include:
• is the information sheet written with clarity and with no exaggerated claims or understatement of
risks?
• is there clarity around potential future use of the samples or data?
• does the reporting back of results reach its intended audience?
• is there evidence of local consultation?
• does the researcher have a good track record?
Good Practice: Engagement
We encourage researchers to move beyond consultation and look to substantial and positive engagement with
MÄori communities. This will ensure that MÄori participation in the research project aligns with their tÅ«manako
(aspirations) and tangible benefits are derived. Where research is clearly MÄori centred and displays a
focus on generating answers to questions that are of particular relevance and importance to MÄori then
additional features in the research protocol will be expected in terms of cultural safety and research design.
Questions of relevance include:
• what is the evidence for engagement with MÄori and what was the shape, time scale and extent of
this?
• how has the consent issue been dealt with and is the mode of informed consent suggested
appropriate?
Best Practice: Kaitiaki
A best practice level of ‘relationship’ empowers MÄori to take a kaitiaki role within the research project with a
view to ensuring that tangible outcomes are realised within MÄori communities. A relationship displaying transparency,
good faith, fairness and truthfulness is captured in the concept of whakapono (hope) and the whakatauki (proverb) “kia
u ki te whakapono, kia aroha tetahi ki tetahi†(Hold strong to your beliefs and care for one another). Where research
is framed by tenets of kaupapa MÄori the above sets of requirements will be augmented by clear evidence that
implications of using this methodology is transparently manifested right across the application and in all
additional and supporting documents.
12 Ministry of Health (2006). 2.2.37, p. 9.
13 Ministry of Health (2006). Appendix 8, Partnership 381-382, p. 79.
14 Ministry of Health (2006). 2.2.33, p. 9.
15 Ministry of Health (2006). Appendix 8, Points to consider 386, p. 80.
16 Ministry of Health (2006). 2.0.23, p. 6.
17 Ministry of Health (2006). 2.7.82, p. 17.
18 Ministry of Health (2009). National Application Form for Ethical Approval of a Research Project v1, Section F,
‘Cultural and social responsibility’.
8 Te Ara Tika
Of particular relevance here will be the development of mechanisms for MÄori to have a governance role in the
planning, development and execution of research as well as monitoring19 the project through its life cycle.
The dissemination of results from the project will be focused on matters of relevance to MÄori with information
directed to an end use that shows clear benefits for MÄori.
Questions of relevance include:
• is the use of kaupapa MÄori research approach evidenced right through the application document?
• what degree of meaningful input have MÄori had in influencing the shape of the research?
• are MÄori participants and their iwi, hapÅ« and whÄnau the prime recipients or contributors of
results?
• what mechanisms are in place to optimise benefits to participants?
• is there an adequate monitoring mechanism?
Tika – Me pehea e tika ai tēnei kaupapa?20
Tika provides a general foundation for tikanga and in the MÄori context refers to what is right and what is good for
any particular situation. In the context of this framework we relate it to the validity of the research21
proposal. The design of a research project is a critical determinant in whether the research is successful in
achieving proposed outcomes, benefiting participants and communities, and bringing about positive
transformative change.
Figure 4: Tika
19 Ministry of Health (2006). Appendix 8, 378, p. 78.
20 How will the project proceed correctly?
21 Ministry of Health (2006). 2.4, p. 13.
Te Ara Tika 9
Respectful relations with MÄori and mana whenua (regional authority) are vital in all research projects,
whatever approach the research team decides to use. There are a continuum of approaches to research,
each with varying degrees of responsiveness to MÄori which reflect the responsibilities, roles,
rights of researchers and MÄori communities. In this framework approaches to research design, Kaupapa
MÄori, MÄori- centred, and Mainstream, (see Appendix C) are considered in relation to the Treaty of
Waitangi principles of partnership, participation and protection.
Minimum standard: Mainstream
A mainstream approach refers to research that may or may not have direct relevance to MÄori and where MÄori engage as
research participants. In these situations researchers are expected to protect the rights and interests
of MÄori although there is little real involvement in the research process or outcomes. Using this research
approach, a number of factors need to be considered when designing the research project including defining the
purpose of the project22 23 and its relevance to MÄori goals24 25. If MÄori are involved as participants26 then
it is important to consider the recruitment methods, for example kanohi-ki-te-kanohi (face to face) and the
sampling frameworks, and whether it is relevant and appropriate to collect ethnicity data27. In this regard
the collection of ethnicity data may not be of primary use to the research proposal itself but can provide valuable
baseline data for other researchers or MÄori communities.
Questions asked should include:
• In what way does this research project impact on MÄori?
• How will MÄori be included in this project? Is this appropriate and respectful?
• Do I need to consult with MÄori for this project? If so, how do I do that?
Good Practice: MÄori-centred
Research designs that give MÄori a greater level of participation within the research process are
encouraged. MÄori-centred research involves MÄori as significant participants in various roles, including research
team and participants, and possibly analysis and outcomes. Issues to be considered when using this
research approach include MÄori involvement in research design28 29, the role of mentors and
MÄori researcher development30, use of sampling frameworks that allow equal explanatory power31 and MÄori
involvement in analysis32 33.
Questions of relevance include:
• how will MÄori be involved in this project? As researchers, participants, advisors?
• how will this research project benefit MÄori in all of the above?
• is there adequate participation of MÄori in different stages of the research project, including research design,
analysis and dissemination of the results?
22 Ministry of Health (2006). 2.4.57, p. 13.
23 Ministry of Health (2006). 2.6.73, p. 15.
24 Ministry of Health (2006). 2.7.82, p. 17.
25 Ministry of Health (2006). Appendix 8, Participation 383, p.79.
26 Ministry of Health (2006). 2.6.74, pp. 15-6.
27 Ministry of Health (2006). 2.4.57, p. 13.
28 Ministry of Health (2006). 2.5.66, p. 14.
29 Ministry of Health (2006). 2.0.23, p. 6.
30 Ministry of Health (2006). 2.6.73, p. 15.
31 Ministry of Health (2006). 2.4.57, p. 13.
32 Ministry of Health (2006). 2.4.57, p. 13.
33 Ministry of Health (2006). 2.0.23, p. 6.
10 Te Ara Tika
Best Practice: Kaupapa MÄori framework
This approach to the research design acknowledges the importance of partnerships and the responsibilities of
MÄori to ensuring the project delivers its intended outcomes to MÄori communities. Use of a kaupapa
MÄori framework to develop research that is designed by, conducted by, made up of, and benefits, MÄori is
promoted. We encourage research that frames MÄori kaupapa as the primary interest of the project, involves MÄori as
co-constructors of the project34, supports kaupapa MÄori theory35 and uses MÄori research methodologies as
appropriate36 37.
Questions of relevance include:
• who defined the research problem?
• for whom is the study worthy and relevant?
• who says so?
• what knowledge will the community gain from this study?
• what are some likely positive outcomes from this study?
• what are some possible negative outcomes?
• how can the negative outcomes be eliminated?
• to whom is the researcher accountable?
• what processes are in place to support the research, the researched and the researcher?38
Note: The TIKA segment is what contextualises the MÄori ethics framework to research. The framework may
have utility in other areas (e.g. environmental, assisted reproductive technology) by adapting this section.
Manaakitanga – MÄ wai e manaaki tÄ“nei kaupapa?39
The concept of manaakitanga encompasses a range of meanings in a traditional sense with a central focus on ensuring
the mana of both parties is upheld. In this context it is associated with notions of cultural and social
responsibility40 and respect for persons41.
Minimum Standard: Cultural Sensitivity
The minimum standard for manaakitanga acknowledges a persons inherent dignity42 and the responsibility that people
have to act in a caring manner towards others. The responsibility to protect and care for people with aroha
and be aware of issues of cultural sensitivity comes to the fore. In this context it includes access to appropriate
advice (e.g. kaumÄtua (elder), advocate)43 44 and respect for concepts of privacy and confidentiality45.
34 Ministry of Health (2006). 2.3.56, p. 12.
35 Ministry of Health (2006). 2.4.61, p. 14.
36 Ministry of Health (2006). 2.0.32, p. 6.
37 Ministry of Health (2006). Appendix 8, Participation 383, p. 79.
38 Smith, L. T., Decolonizing methodologies: Research and Indigenous peoples, New York: Zed Books, 1999, p.173.
39 Who will ensure respect is maintained?
40 Ministry of Health (2006). 2.7, p. 16.
41 Ministry of Health (2006). 2.1, p. 6.
42 Ministry of Health (2006). 2.7.77, p. 16.
43 Ministry of Health (2006). 2.1.24-26, p. 6.
44 Ministry of Health (2006). 2.7.77, p. 16.
45 Ministry of Health (2006). 2.3, p. 11.
Te Ara Tika 11
Concepts of privacy and confidentiality are altered when the individualised notion of autonomy is
removed. Information is shared to provide support and increase the transparency and accountability
between members of the community.
While recognising the appropriateness of privacy and confidentiality to safeguard any harmful effects
from disclosure of information, in many situations, the level of confidentiality can be negotiated
with communities and participants. This may simply involve participants consenting to be named as part
of the study and giving them the opportunity to remove or de-identify particular comments from the final report.
Figure 5: Manaakitanga
Questions asked should include:
• are the participants being treated with dignity and respect?
• will the participants have access to appropriate advice?
• is privacy and confidentiality being applied appropriately?
Good Practice: Cultural safety
A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
MÄori values and concepts50 51 52 53 54 indigenous values and concepts, and allowing for the use of whÄnau
support55 56 and appropriate MÄori protocols57.
46 Ministry of Health (2006). 2.7.82, p. 17.
47 Ministry of Health (2006). 2.6.73, p. 15.
48 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
49 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
50 Ministry of Health (2006). 1.5.14, p. 3.
12 Te Ara Tika
Questions of relevance include:
• are MÄori values or concepts used within this research project?
• how will MÄori protocols be observed as part of the research project?
• are whÄnau able to support participants within this project?
Best Practice: MÄhaki
Manaakitanga is fully realized in the context of relationships. Here mana akiaki (empowerment)
empowers partnerships whose quality is enhanced by the level of the parties’ faith and trust in each
other (whakapono). Extending beyond cultural safety, mÄhaki (respectful conduct) acknowledges the
importance of recognizing spiritual integrity58, MÄori philosophy59, and may include processes like whakawÄtea
(realignment) within the research project.
Questions of relevance include:
• are kaumÄtua required to guide the research team?
• how will researchers ensure the safe application of protocols?
Mana – Kei a wai te mana mŠtēnei kaupapa?60
Figure 6: Mana
51 Ministry of Health (2006). 2.0.23, p. 6.
52 Ministry of Health (2006). 2.5.66, p. 14.
53 Ministry of Health (2006). 2.7.79-81, p. 16.
54 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
55 Ministry of Health (2006). 2.0.23, p. 6.
56 Ministry of Health (2006). 2.7.77, p. 16.
57 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
58 Ministry of Health (2006). 2.0.23, p. 6.
59 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
60 Who has control over the project?
Te Ara Tika 13
Minimum standard: Mana tangata
Mana in a MÄori context refers to power and authority bestowed, gained or inherited individually and
collectively. In the context of this framework mana relates to equity61 and distributive justice62. Mana acts
as a barometer of the quality of relationships by acknowledging issues of power and authority in
relation to who has rights, roles and responsibilities when considering the risks, benefits and outcomes of the
project.
Mana Tangata (autonomous individual), in the context of this framework, refers to individuals that choose
to participate in research and their right to be appropriately informed of risks to their individual or
collective mana. As such consideration should be given to the identification of risks (individual/collective)63
64, fairness in terms of their distribution65 and the place of koha66 67. Providing clear understanding of the
requirements for informed consent68, and recognising the place of oral consent in some MÄori settings69 is integral to
demonstrating respect for the mana of MÄori participants.
Questions asked should include:
• how open/transparent has the process of consultation been?
• how honestly and fully have the potential or real risks involved in this research been explained?
• how equitable will the results be for MÄori?
• are the ideas behind koha understood?
• is there evidence of:
o equitable outcomes for MÄori?
o minimisation of harm?
o fairness by appropriate inclusion of MÄori?
o engagement with the most appropriate groups to deliver favourable research outcomes?
Good Practice: Mana whenua
Mana whenua are iwi and hapū who are recognized as having regional authority and a primary role discerning benefits and
making decisions around resource management and research being done in their rohe pÅtae (tribal area)70 71
72. Researchers should be establishing meaningful relationships with mana whenua at
the research design/conceptual stage to ensure the research provides outcomes for MÄori73 74 75 and
provides opportunities to explore benefit sharing arrangements76.
61 Ministry of Health (2006). 2.6.73, p. 15.
62 Ministry of Health (2006). 2.6, p. 15.
63 Ministry of Health (2006). 2.0.23, p. 6.
64 Ministry of Health (2006). 2.5.64-72, pp. 14-5.
65 Ministry of Health (2006). 2.6.73, p. 15.
66 Ministry of Health (2006). 2.2.43, p. 10.
67 Ministry of Health (2006). 2.7.85-6, p. 17.
68 Ministry of Health (2006). 2.2, p. 7.
69 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
70 Ministry of Health (2006). 2.0.23, p. 6.
71 Ministry of Health (2006). 2.3.55, p. 12.
72 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
73 Ministry of Health (2006). 2.6.73, p. 15.
74 Ministry of Health (2006). 2.7.82, p. 17.
75 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
76 Ministry of Health (2006). 2.6.73, p. 15.
14 Te Ara Tika
Recognizing the mandated authority of hapū and iwi77 78 79 acknowledges the role they have in dealing
with issues around consent. It may be appropriate to recognise ethical requirements for ‘collective
consent’80 81 82 83 in circumstances where risks to the collective are at least as serious as those to the
individual participant.
Questions of relevance include:
• who will benefit from the research and how will this be evidenced?
• have the contributions of mana whenua been acknowledged?
• is there evidence of mana whenua goals, aspirations, development, or expectations?
• how will these be measured and by whom?
• where will the research be developed, undertaken, and with whom?
• has there been engagement with mana whenua and in what capacity?
• to whom must the researchers report back to besides funders/institutions?
• what and where is the relevance to/for MÄori in their ongoing development in this research?
• does the research include the achievement of MÄori goals as an outcome?
Best practice: Mana whakahaere
In regard to research mana whakahaere refers to the sharing of power and control in the research relationship with
hapÅ«, iwi or relevant MÄori communities who assume the responsibility for the outcomes of the project. This
presupposes engagement with MÄori as mana whenua. Mana whakahaere represents MÄori control within the research project
and includes acknowledgement of iwi intellectual property84, their knowledge systems (MÄtauranga MÄori)85,
ownership of research data86 87 88 and guardianship responsibilities in relation to the protection and dissemination
of information from the research project.
Questions of relevance include:
• is there evidence of engagement in a meaningful relationship with mana whenua, Mataawaka (MÄori living
within the area not related to local iwi), or iwi researchers?
• how does this application protect MÄori intellectual property?
• has consent been gained to access/use of mÄtauranga MÄori?
• how is data ownership guaranteed under mana whakahaere?
• whose intellectual property will/does this research become?
• has mÄtauranga MÄori contributed to the research and how is this evidenced?
• who will own the data produced/collected/generated during the research?
77 Ministry of Health (2006). 2.0.23, p. 6.
78 Ministry of Health (2006). 2.3.55, p. 12.
79 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
80 Ministry of Health (2006). 2.2.40-1, p. 10.
81 Ministry of Health (2006). 2.3.56, p. 12.
82 Ministry of Health (2006). 2.0.23, p. 6.
83 Ministry of Health (2006). 2.7.78, p. 16.
84 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
85 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
86 Ministry of Health (2006). 2.0.23, p. 6.
87 Ministry of Health (2006). 2.3.55, p. 12.
88 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
Te Ara Tika 15
Special ethical considerations
This section outlines areas of special ethical consideration.
Collection and use of human tissue
The body is considered tapu by MÄori and Indigenous people generally. Researchers involved in health or
medical research that involves the body, or any part of the body, such as organs, blood, hair, saliva and/or
other tissue, must do so in a respectful manner. The collection of human tissue is particularly sensitive when
it involves the use of a deceased person’s tissue.
Genetic research
Genetic research is an area of prime sensitivity for MÄori because of the association with whakapapa. Communities are
also concerned about new technologies and research in areas such as genetic engineering, the creation of
transgenic life-forms, and human genome research investigating human variation and diversity in indigenous
populations. Researchers should be aware of the following issues:
Informed consent
Concerns have been expressed about the nature and specificity of consent obtained in the informed consent process. In
particular, explicit consents should be sought for:
• ongoing storage in tissue banks
• the establishment of cell lines
• tissue being sent overseas
• use within genetic studies
• future use
MÄori favour the recognition of both individual and collective consents as some ethical issues can be
usefully considered and consented to by an individual and other ethical issues require community
engagement. A collective is likely to be involved in early decisions about the appropriateness of the study
while an individual can decide once the study has begun whether or not they will participate89. This means
that two forms of consent are required for research involving human tissue and/or genetic samples. Firstly, that of
an appropriate community/collective for the study to take place (via consultation) and secondly, those of individual
MÄori participating in the study.
On-going communication with donors/participants
Beyond the initial consent process, it is also important to provide a communication channel so that donors
and their families are able to find out what has happened to their tissue and for which research projects it has been
included. This provides a mechanism for donors/participants to vary or withdraw their consent both for the actual study
and future studies (if so consented).
Interpretation of results
Early genetic research focused on identifying single genes responsible for specific familial disorders. However,
radical technological advancements such as high throughput testing and genome-wide scanning techniques have
made it possible to examine complex conditions influenced by multiple genes and environmental
factors to determine population susceptibility.
89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
Production. International Social Science Journal. Accepted for publication.
16 Te Ara Tika
The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
incorrect terminology, for example ‘MÄori genes’.
Intellectual property
MÄori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
Treaty of Waitangi (article two: protection of taonga (resources), the United Nations Declaration on the
Rights of Indigenous Peoples91, the Waitangi Tribunal (Wai 262)92 and the Mataatua Declaration93 (an
affirmation of kaitiakitanga in relation to the intellectual property rights of MÄori).
Of particular concern to MÄori is research that involves the use of traditional plants and other natural resources.
Specific concerns for MÄori arise from the claiming of intellectual property over natural and cultural
properties, and the exclusionary nature of these IP provisions. Traditional uses should never be impacted by IP
patents.
Opportunities for the sharing of new intellectual property with Maori communities should be facilitated particularly
where Maori analyses have contributed to the development of the intellectual property.
Representation
MÄori ethics committee members, along with their respective colleagues need to assess the appropriateness
of consulted parties and determine whether there are other potential organisations that should
have been part of the engagement process. The following table identifies some criteria for assessing the
appropriateness of the representative body.
90 Hausman, D. (2008). Protecting groups from genetic research. Bioethics. Vol 22(3), pg 157-165.
91 UN General Assembly, United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the
General Assembly, 2 October 2007, http://www.un.org/documents/instruments/docs_en.asp?type=declarat.
92 More information on this claim can be found on the Waitangi Tribunal website at: http://www.waitangi-
tribunal.govt.nz/inquiries/genericinquiries2/florafauna/.
93 The Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples (1993).
http://www.ngatiawa.iwi.nz/cms/CMSFiles/File/Associations/mataatua%20declaration.pdf.
Te Ara Tika 17
Table 1: Assessing appropriateness of MÄori consultation
Who are they
Expertise/key interest areas
Level of engagement in selection of MÄori members
Level of participation in consultation process
Use of evaluation techniques e.g. risk assessment tool, checklist
Relationships with other groups e.g. DHB representative
Current process for feedback, discussion, reporting
Capacity to engage in consultation, e.g. time, resources, expertise
Willingness to engage with ethics committee
Benefit sharing
Equity and justice are ethical principles underpinning the importance of benefit-sharing. Research will also have a
range of outcomes and part of the ethical deliberation is to consider the nature of the outcomes (risk
versus benefit, short versus long term) and their relative distribution (researchers, participants, communities,
society). Researchers will legitimately benefit from being involved in research but consideration should be given to
how participants and their communities might also benefit from participation.
Benefits to researchers
• Status and reputation
• Qualifications (Masters and PhD theses)
• Personal advancement
• Increasing networks
Benefits to participants
• Access to interventions
• Opportunity to share experiences
• Koha
• Acknowledgement in publications
• Copies of reports
18 Te Ara Tika
Benefits to participant communities
• Research capacity – research skills, understanding research processes
• Access to interventions
• Collection and protection of existing intellectual property
• Knowledge advancement
• Copies of reports
• Sharing of new intellectual property
Benefit to MÄori
• Community development , for example health promoting events
• Researcher development, for example qualifications and research experience
• Knowledge advancement, for example research outputs, hui (meetings/seminars) and wÄnanga (workshops/teaching
sessions)
• Development of mÄtauranga MÄori
Benefit to society
• Knowledge advancement, for example research outputs, hui and wÄnanga
• Inclusiveness and diversity within the research system
Implementation
This framework helps to clarify key ethical concepts for MÄori and in doing so supports decision-making around MÄori
ethical issues. It does not replace ethical deliberation but enhances the process by framing MÄori ethical
issues in a way that aligns to the expectations of MÄori communities. The MÄori ethical framework
should be used in conjunction with the Ministry of Health’s Operational Standard for Ethics Committees
(2006) and the majority of the concepts and issues identified within the MÄori ethical framework are
referenced within the Operational Standard for Ethics Committees. To gain a fuller appreciation of MÄori ethical
concepts, issues and concerns, additional training should be undertaken.
Te Ara Tika 19
Glossary of MÄori terms
Disclaimer: Many of the descriptions used in this glossary are specific interpretations for the purposes of this
document and do not denote the fullness of meaning normally associated with the word or term.
Tikanga Protocols and practises
Kawa Primary values
Mana Justice and equity, reflected through power and
authority
Kaitiaki Guardian/advocate
WhÄnau Family, including extended, may not be blood ties
Te Ao MÄori MÄori world
WhÄnau ora Family health
MÄtauranga Traditional knowledge
Whakapapa Relationships
Tika Research design
Manaakitanga Cultural and social responsibility
Whakapono Faith
TÅ«manako Aspirations
Aroha
Aro ki te ha
Care Awareness
Tapu Restricted
Noa Unrestricted
Kia TÅ«pato To be careful
Kia Äta-whakaaro Precise analysis
Kia Äta-korero Robust discussion
Kia Äta-whiriwhiri Consciously determine
Kia Äta-haere Proceed with understanding
Kaupapa Topic, purpose
Kia aroha ki a Tangaroa To be careful and aware of the potential dangers in
the sea
Mai i te whai ao ki te Ao Marama Moving towards understanding Whakatauki
Proverb
Mana Whenua Regional authority, customary title over land
Kanohi ki te kanohi Face to face
KaumÄtua Elder
Mana Akiaki Empowerment
MÄhaki Respectful conduct
WhakawÄtea Realignment
Mana Tangata Autonomous individual
Rohe pÅtae Tribal area
Mana whakahaere Shared power and control of outcomes and
dissemination
Tangata whenua People of the land
Mataawaka MÄori living within the area not related to local iwi
Taonga Resources
WÄnanga Workshops, teaching sessions
Hui Meetings, seminars
Hapū Kinship group
Iwi Tribe
20 Te Ara Tika
Appendix A: Timeline of developments in MÄori research ethics
Date
1991
1993
1993
1994
1994
1996
1996
1997
1998
1998
1998/1999
1999
1999
2000
2001
2002
2002
2003
Hui/Publication
Ngahuia Te Awekotuku, he tikanga whakaaro
First International Conference on the Cultural and Intellectual Property Rights of Indigenous Peoples (Whakatane)
MÄori Working Group on Health Sector Ethics established by the Ministry of Health
Te Ara Ahu Whakamua, MÄori Health Decade Hui Health Sector Ethics: Nga tikanga pono wahanga hauora PÅ« Tai Ora first
meeting held
Hui Whakapiripiri, Wellington (HRC)
Hui Whakatipu/piripiri, Whaiora Marae, Otara, Auckland (HRC) Te Oru Rangahau MÄori Research Conference, Palmerston
North
HRC produces Guidelines for Researchers on Health Research Involving MÄori
PÅ« Tai Ora – tikanga MÄori, MÄori ethical principles, training/education
Linda Smith, Decolonising methodologies
Te Puni Kokiri publishes Evaluation for MÄori: Guidelines for Government agencies (Te Puni KÅkiri, 1999)
PÅ« Tai Ora meeting
Fiona Cram, Rangahau MÄori: Tona tika tona pono – The validity and integrity of MÄori researchers
Kiri Powick, Nga Take Matatika mo te mahi Rangahau MÄori. MÄori research ethics: a literature review of the ethical
issues and implications of kaupapa MÄori research and Research involving MÄori for Researchers, Supervisors and Ethics
Committees
PÅ« Tai Ora wananga at Te Herenga Waka Marae, Victoria University, Wellington
Fiona Cram, Preliminary discussions with key MÄori informants
Te Ara Tika 21
Date
2003
2004
2004
2004
2004
2004
2005
2006
2006
2006
2007
2007
2008
2008
2009
Hui/Publication
Hirini Moko Mead, Tikanga MÄori: Living by MÄori values
Andrew Sporle & Jonathon Koea, MÄori Responsiveness in health and medical research
MÄtauranga Tuku Iho Tikanga Rangahau, NgÄ Pae o te MÄramatanga hosts a Traditional Knowledge and Research Ethics
Conference in Wellington
Maui Hudson, He Matatika MÄori: MÄori and Ethical Review of Health Research
Rachel Robson, MÄori framework for ethical review of health and disability research: Scoping report to the National
Advisory Committee on Health and Disability Ethics
NEAC, the HRC and NgÄ Pae o te MÄramatanga establish a collaborative relationship to facilitate development of a MÄori
Framework for health and disability research ethics
PÅ« Tai Ora hui, themes discussed include MÄori members’ role, quality of consultation/representation, need for
consensus/consistency, frameworks/models for decision-making on MÄori ethical issues, need for more information in a
number of areas
Completion of NEAC contracted stocktake on how the central issues in New Zealand and other countries have so far been
addressed (Kennedy & Wehipeihana, 2006)
Hui Whakapiripiri, discussed Ngai Tahu ethics, Rod Lea effect, ethical issues for MÄori, role of MÄori EC members
PÅ« Tai Ora hui, meeting of the MÄori and Pacific members of the Health and Disability Ethics Committees
PÅ« Tai Ora hui, meeting of the MÄori and Pacific members of the Health and Disability Ethics Committees
Meeting of NEAC, HRC and NgÄ Pae o te MÄramatanga, agreed new project plan and next steps in project
HRC updates its 1998 Guidelines for Researchers on Health Research Involving MÄori (Health Research Council, 2008).
Mason Durie, 9th Global Forum on Bioethics in Research. The Ethics of Indigenous Peoples and Vulnerable Populations
Maui Hudson & Khyla Russell, The Treaty of Waitangi and Research Ethics
22 Te Ara Tika
Appendix B: MÄori Ethical Frameworks
Kaa Williams Te Pa Harakeke o te Tangata
Manuka Henare Koru of MÄori ethics
Hugh Kawharu Te noho kotahitanga
Hirini Moko Mead Tikanga tests
Linda Smith Kaupapa MÄori practices
Mason Durie Rangahau painga
Stephanie Palmer Homai te waiora ki ahau
Te Ara Tika 23
Appendix C: Characteristics of MÄori research
Characteristics
Research Involving MÄori
MÄori-Centred Research
Kaupapa MÄori Research
Description
Research where MÄori are involved as participants or subjects, or possibly as junior members of a research team;
Research where MÄori data is sought and analysed; Research where MÄori may be trained in contemporary research methods
and mainstream analysis.
Research where MÄori are significant participants, and are typically senior members of research teams; Research where a
MÄori analysis is undertaken and which produces MÄori knowledge, albeit measured against mainstream standards for
research.
Research where MÄori are significant participants, and where the research team is typically all MÄori; Research where a
MÄori analysis undertaken and which produces MÄori knowledge; Research which primarily meets expectations and quality
standards set by MÄori.
Examples
Analysis of ethnic differentials in disease rates; genetic study of familial cancer.
Longitudinal social science study of MÄori households.
Traditional study of cosmology; study of cultural specific aspects of determinants of health.
Control
Mainstream.
Mainstream.
MÄori.
MÄori Participation
Minor.
Major.
Major, possibly exclusive.
Methods/tools
Contemporary – mainstream.
Contemporary – mainstream and MÄori.
Contemporary – mainstream and MÄori.
Analysis
Mainstream.
MÄori.
MÄori.