79C3C34C52B45572883A05D425EB0F82
Te Ara Tika. Guidelines for MāoriResearch Ethics: A Framework forResearchers and Ethics CommitteeMembers (2010)
https://www.hrc.govt.nz/sites/default/files/2019-06/Resource%20Library%20PDF%20-%20Te%20Ara%20Tika%20Guidelines%20for%20Maori%20Research%20Ethics_0.pdf
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Indicators in focus are typically shown highlighted in yellow; |
Peer Indicators (that share the same Vulnerability association) are shown highlighted in pink; |
"Outside" Indicators (those that do NOT share the same Vulnerability association) are shown highlighted in green; |
Trigger Words/Phrases are shown highlighted in gray. |
Link to Orphaned Trigger Words (Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay)
Applicable Type / Vulnerability / Indicator Overlay for this Input
Political / Indigenous
Searching for indicator indigenous:
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p.000012: capacity of research to improve human development7.
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p.000012:
p.000012: 2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
p.000012: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
p.000012: 3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
p.000012: medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
p.000012: amended by the 59th WMA General Assembly, Seoul, October 2008.
p.000012: 4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
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p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
p.000012: Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
p.000012: (justice and equity, reflected through power and authority). As the environment changes or new situations arise,
p.000012: tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
p.000012: interface for accessing repositories of cultural knowledge and experience that can be used to inform
p.000012: ethical deliberations. Tikanga also provides a framework through which Māori can actively engage with
p.000012: ethical issues and consider the effect research may have on their values or relationships.
p.000012:
p.000012: Purpose
p.000012:
p.000012: Articulating the ethical dimensions of tikanga as they relate to particular research proposals is
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p.000012: of Health.
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p.000012: Te Ara Tika 3
p.000012: In addition, whānau/hapū/iwi (family/kinship group/tribe) expect Māori members of ethics committee to act as
p.000012: kaitiaki by understanding Māori ethical concerns, advocating for Māori ethical issues, and protecting Māori interests.
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p.000012: Principles of ethical review
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p.000012: Kaitiaki (brave, competent
p.000012: and capable)
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p.000012: Cultural/intellectual property rights, Te Ao Māori (Māori world), the right to participate in society as Māori, whānau
p.000012: ora (family health)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
p.000012: The framework considers that both the research design and the cultural and social responsibility of the
p.000012: researchers have an immediate influence on the likely outcomes of the research project and should be considered during
p.000012: ethical deliberations.
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p.000012: Figure 2: Māori ethical framework
p.000012:
p.000012: The Māori ethics framework references four tikanga based principles (whakapapa (relationships), tika
...
p.000012: have utility in other areas (e.g. environmental, assisted reproductive technology) by adapting this section.
p.000012:
p.000012: Manaakitanga – Mā wai e manaaki tēnei kaupapa?39
p.000012:
p.000012: The concept of manaakitanga encompasses a range of meanings in a traditional sense with a central focus on ensuring
p.000012: the mana of both parties is upheld. In this context it is associated with notions of cultural and social
p.000012: responsibility40 and respect for persons41.
p.000012:
p.000012: Minimum Standard: Cultural Sensitivity
p.000012:
p.000012: The minimum standard for manaakitanga acknowledges a persons inherent dignity42 and the responsibility that people
p.000012: have to act in a caring manner towards others. The responsibility to protect and care for people with aroha
p.000012: and be aware of issues of cultural sensitivity comes to the fore. In this context it includes access to appropriate
p.000012: advice (e.g. kaumātua (elder), advocate)43 44 and respect for concepts of privacy and confidentiality45.
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p.000012: 34 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 35 Ministry of Health (2006). 2.4.61, p. 14.
p.000012: 36 Ministry of Health (2006). 2.0.32, p. 6.
p.000012: 37 Ministry of Health (2006). Appendix 8, Participation 383, p. 79.
p.000012: 38 Smith, L. T., Decolonizing methodologies: Research and Indigenous peoples, New York: Zed Books, 1999, p.173.
p.000012: 39 Who will ensure respect is maintained?
p.000012: 40 Ministry of Health (2006). 2.7, p. 16.
p.000012: 41 Ministry of Health (2006). 2.1, p. 6.
p.000012: 42 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 43 Ministry of Health (2006). 2.1.24-26, p. 6.
p.000012: 44 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 45 Ministry of Health (2006). 2.3, p. 11.
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p.000012: Te Ara Tika 11
p.000012:
p.000012: Concepts of privacy and confidentiality are altered when the individualised notion of autonomy is
p.000012: removed. Information is shared to provide support and increase the transparency and accountability
p.000012: between members of the community.
p.000012:
p.000012: While recognising the appropriateness of privacy and confidentiality to safeguard any harmful effects
p.000012: from disclosure of information, in many situations, the level of confidentiality can be negotiated
p.000012: with communities and participants. This may simply involve participants consenting to be named as part
p.000012: of the study and giving them the opportunity to remove or de-identify particular comments from the final report.
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p.000012: Figure 5: Manaakitanga
p.000012:
p.000012: Questions asked should include:
p.000012: • are the participants being treated with dignity and respect?
p.000012: • will the participants have access to appropriate advice?
p.000012: • is privacy and confidentiality being applied appropriately?
p.000012:
p.000012: Good Practice: Cultural safety
p.000012:
p.000012: A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
p.000012: the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
p.000012: 48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
p.000012: Māori values and concepts50 51 52 53 54 indigenous values and concepts, and allowing for the use of whānau
p.000012: support55 56 and appropriate Māori protocols57.
p.000012:
p.000012: 46 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 47 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 48 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 49 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 50 Ministry of Health (2006). 1.5.14, p. 3.
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p.000012: 12 Te Ara Tika
p.000012:
p.000012: Questions of relevance include:
p.000012: • are Māori values or concepts used within this research project?
p.000012: • how will Māori protocols be observed as part of the research project?
p.000012: • are whānau able to support participants within this project?
p.000012:
p.000012: Best Practice: Māhaki
p.000012:
p.000012: Manaakitanga is fully realized in the context of relationships. Here mana akiaki (empowerment)
p.000012: empowers partnerships whose quality is enhanced by the level of the parties’ faith and trust in each
p.000012: other (whakapono). Extending beyond cultural safety, māhaki (respectful conduct) acknowledges the
p.000012: importance of recognizing spiritual integrity58, Māori philosophy59, and may include processes like whakawātea
p.000012: (realignment) within the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • are kaumātua required to guide the research team?
p.000012: • how will researchers ensure the safe application of protocols?
p.000012:
p.000012: Mana – Kei a wai te mana mō tēnei kaupapa?60
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
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p.000012: • how is data ownership guaranteed under mana whakahaere?
p.000012: • whose intellectual property will/does this research become?
p.000012: • has mātauranga Māori contributed to the research and how is this evidenced?
p.000012: • who will own the data produced/collected/generated during the research?
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p.000012: 77 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 78 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 79 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 80 Ministry of Health (2006). 2.2.40-1, p. 10.
p.000012: 81 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 82 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 83 Ministry of Health (2006). 2.7.78, p. 16.
p.000012: 84 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 85 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 86 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 87 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 88 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
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p.000012: Te Ara Tika 15
p.000012:
p.000012: Special ethical considerations
p.000012:
p.000012: This section outlines areas of special ethical consideration.
p.000012:
p.000012: Collection and use of human tissue
p.000012: The body is considered tapu by Māori and Indigenous people generally. Researchers involved in health or
p.000012: medical research that involves the body, or any part of the body, such as organs, blood, hair, saliva and/or
p.000012: other tissue, must do so in a respectful manner. The collection of human tissue is particularly sensitive when
p.000012: it involves the use of a deceased person’s tissue.
p.000012:
p.000012: Genetic research
p.000012: Genetic research is an area of prime sensitivity for Māori because of the association with whakapapa. Communities are
p.000012: also concerned about new technologies and research in areas such as genetic engineering, the creation of
p.000012: transgenic life-forms, and human genome research investigating human variation and diversity in indigenous
p.000012: populations. Researchers should be aware of the following issues:
p.000012:
p.000012: Informed consent
p.000012: Concerns have been expressed about the nature and specificity of consent obtained in the informed consent process. In
p.000012: particular, explicit consents should be sought for:
p.000012:
p.000012: • ongoing storage in tissue banks
p.000012: • the establishment of cell lines
p.000012: • tissue being sent overseas
p.000012: • use within genetic studies
p.000012: • future use
p.000012:
p.000012: Māori favour the recognition of both individual and collective consents as some ethical issues can be
p.000012: usefully considered and consented to by an individual and other ethical issues require community
p.000012: engagement. A collective is likely to be involved in early decisions about the appropriateness of the study
p.000012: while an individual can decide once the study has begun whether or not they will participate89. This means
p.000012: that two forms of consent are required for research involving human tissue and/or genetic samples. Firstly, that of
p.000012: an appropriate community/collective for the study to take place (via consultation) and secondly, those of individual
p.000012: Māori participating in the study.
p.000012:
p.000012: On-going communication with donors/participants
p.000012: Beyond the initial consent process, it is also important to provide a communication channel so that donors
p.000012: and their families are able to find out what has happened to their tissue and for which research projects it has been
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p.000012: made it possible to examine complex conditions influenced by multiple genes and environmental
p.000012: factors to determine population susceptibility.
p.000012:
p.000012: 89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
p.000012: Production. International Social Science Journal. Accepted for publication.
p.000012:
p.000012: 16 Te Ara Tika
p.000012:
p.000012: The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
p.000012: research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
p.000012: there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
p.000012: through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
p.000012: incorrect terminology, for example ‘Māori genes’.
p.000012:
p.000012: Intellectual property
p.000012: Māori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
p.000012: Treaty of Waitangi (article two: protection of taonga (resources), the United Nations Declaration on the
p.000012: Rights of Indigenous Peoples91, the Waitangi Tribunal (Wai 262)92 and the Mataatua Declaration93 (an
p.000012: affirmation of kaitiakitanga in relation to the intellectual property rights of Māori).
p.000012:
p.000012: Of particular concern to Māori is research that involves the use of traditional plants and other natural resources.
p.000012: Specific concerns for Māori arise from the claiming of intellectual property over natural and cultural
p.000012: properties, and the exclusionary nature of these IP provisions. Traditional uses should never be impacted by IP
p.000012: patents.
p.000012:
p.000012: Opportunities for the sharing of new intellectual property with Maori communities should be facilitated particularly
p.000012: where Maori analyses have contributed to the development of the intellectual property.
p.000012:
p.000012: Representation
p.000012: Māori ethics committee members, along with their respective colleagues need to assess the appropriateness
p.000012: of consulted parties and determine whether there are other potential organisations that should
p.000012: have been part of the engagement process. The following table identifies some criteria for assessing the
p.000012: appropriateness of the representative body.
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p.000012: 90 Hausman, D. (2008). Protecting groups from genetic research. Bioethics. Vol 22(3), pg 157-165.
p.000012: 91 UN General Assembly, United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the
p.000012: General Assembly, 2 October 2007, http://www.un.org/documents/instruments/docs_en.asp?type=declarat.
p.000012: 92 More information on this claim can be found on the Waitangi Tribunal website at: http://www.waitangi-
p.000012: tribunal.govt.nz/inquiries/genericinquiries2/florafauna/.
p.000012: 93 The Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples (1993).
p.000012: http://www.ngatiawa.iwi.nz/cms/CMSFiles/File/Associations/mataatua%20declaration.pdf.
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p.000012: Te Ara Tika 17
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p.000012: Table 1: Assessing appropriateness of Māori consultation
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p.000012: Who are they
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p.000012: Expertise/key interest areas
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p.000012: Level of engagement in selection of Māori members
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p.000012: Level of participation in consultation process
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p.000012: Use of evaluation techniques e.g. risk assessment tool, checklist
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p.000012: Relationships with other groups e.g. DHB representative
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p.000012: Current process for feedback, discussion, reporting
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p.000012: Capacity to engage in consultation, e.g. time, resources, expertise
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p.000012: Willingness to engage with ethics committee
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p.000012: Benefit sharing
p.000012: Equity and justice are ethical principles underpinning the importance of benefit-sharing. Research will also have a
p.000012: range of outcomes and part of the ethical deliberation is to consider the nature of the outcomes (risk
p.000012: versus benefit, short versus long term) and their relative distribution (researchers, participants, communities,
p.000012: society). Researchers will legitimately benefit from being involved in research but consideration should be given to
p.000012: how participants and their communities might also benefit from participation.
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p.000012: Mana Tangata Autonomous individual
p.000012: Rohe pōtae Tribal area
p.000012: Mana whakahaere Shared power and control of outcomes and
p.000012: dissemination
p.000012: Tangata whenua People of the land
p.000012: Mataawaka Māori living within the area not related to local iwi
p.000012: Taonga Resources
p.000012: Wānanga Workshops, teaching sessions
p.000012: Hui Meetings, seminars
p.000012: Hapū Kinship group
p.000012: Iwi Tribe
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p.000012: 20 Te Ara Tika
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p.000012: Appendix A: Timeline of developments in Māori research ethics
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p.000012: Date
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p.001991: 1991
p.001993: 1993
p.001993:
p.001993: 1993
p.001993:
p.001994: 1994
p.001994: 1994
p.001996: 1996
p.001996: 1996
p.001997: 1997
p.001998: 1998
p.001998: 1998
p.001998:
p.001998: 1998/1999
p.001998:
p.001999: 1999
p.001999: 1999
p.001999:
p.002000: 2000
p.002001: 2001
p.002001:
p.002002: 2002
p.002002:
p.002002:
p.002002:
p.002002: 2002
p.002002:
p.002003: 2003
p.002003: Hui/Publication
p.002003:
p.002003: Ngahuia Te Awekotuku, he tikanga whakaaro
p.002003: First International Conference on the Cultural and Intellectual Property Rights of Indigenous Peoples (Whakatane)
p.002003: Māori Working Group on Health Sector Ethics established by the Ministry of Health
p.002003: Te Ara Ahu Whakamua, Māori Health Decade Hui Health Sector Ethics: Nga tikanga pono wahanga hauora Pū Tai Ora first
p.002003: meeting held
p.002003: Hui Whakapiripiri, Wellington (HRC)
p.002003: Hui Whakatipu/piripiri, Whaiora Marae, Otara, Auckland (HRC) Te Oru Rangahau Māori Research Conference, Palmerston
p.002003: North
p.002003: HRC produces Guidelines for Researchers on Health Research Involving Māori
p.002003: Pū Tai Ora – tikanga Māori, Māori ethical principles, training/education
p.002003: Linda Smith, Decolonising methodologies
p.002003: Te Puni Kokiri publishes Evaluation for Māori: Guidelines for Government agencies (Te Puni Kōkiri, 1999)
p.002003: Pū Tai Ora meeting
p.002003: Fiona Cram, Rangahau Māori: Tona tika tona pono – The validity and integrity of Māori researchers
p.002003: Kiri Powick, Nga Take Matatika mo te mahi Rangahau Māori. Māori research ethics: a literature review of the ethical
p.002003: issues and implications of kaupapa Māori research and Research involving Māori for Researchers, Supervisors and Ethics
p.002003: Committees
p.002003: Pū Tai Ora wananga at Te Herenga Waka Marae, Victoria University, Wellington
p.002003: Fiona Cram, Preliminary discussions with key Māori informants
p.002003:
p.002003: Te Ara Tika 21
p.002003:
p.002003:
p.002003: Date
p.002003:
p.002003: 2003
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002005: 2005
p.002005:
p.002005:
p.002005:
p.002006: 2006
p.002006:
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p.002009: NEAC, the HRC and Ngā Pae o te Māramatanga establish a collaborative relationship to facilitate development of a Māori
p.002009: Framework for health and disability research ethics
p.002009: Pū Tai Ora hui, themes discussed include Māori members’ role, quality of consultation/representation, need for
p.002009: consensus/consistency, frameworks/models for decision-making on Māori ethical issues, need for more information in a
p.002009: number of areas
p.002009: Completion of NEAC contracted stocktake on how the central issues in New Zealand and other countries have so far been
p.002009: addressed (Kennedy & Wehipeihana, 2006)
p.002009: Hui Whakapiripiri, discussed Ngai Tahu ethics, Rod Lea effect, ethical issues for Māori, role of Māori EC members
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Meeting of NEAC, HRC and Ngā Pae o te Māramatanga, agreed new project plan and next steps in project
p.002009: HRC updates its 1998 Guidelines for Researchers on Health Research Involving Māori (Health Research Council, 2008).
p.002009: Mason Durie, 9th Global Forum on Bioethics in Research. The Ethics of Indigenous Peoples and Vulnerable Populations
p.002009: Maui Hudson & Khyla Russell, The Treaty of Waitangi and Research Ethics
p.002009:
p.002009: 22 Te Ara Tika
p.002009:
p.002009: Appendix B: Māori Ethical Frameworks
p.002009:
p.002009: Kaa Williams Te Pa Harakeke o te Tangata
p.002009:
p.002009: Manuka Henare Koru of Māori ethics
p.002009:
p.002009: Hugh Kawharu Te noho kotahitanga
p.002009:
p.002009: Hirini Moko Mead Tikanga tests
p.002009:
p.002009: Linda Smith Kaupapa Māori practices
p.002009:
p.002009: Mason Durie Rangahau painga
p.002009:
p.002009: Stephanie Palmer Homai te waiora ki ahau
p.002009:
p.002009: Te Ara Tika 23
p.002009:
p.002009: Appendix C: Characteristics of Māori research
p.002009:
p.002009:
p.002009:
p.002009:
p.002009: Characteristics
p.002009: Research Involving Māori
p.002009: Māori-Centred Research
p.002009: Kaupapa Māori Research
p.002009:
p.002009:
p.002009: Description
p.002009: Research where Māori are involved as participants or subjects, or possibly as junior members of a research team;
p.002009: Research where Māori data is sought and analysed; Research where Māori may be trained in contemporary research methods
p.002009: and mainstream analysis.
p.002009: Research where Māori are significant participants, and are typically senior members of research teams; Research where a
p.002009: Māori analysis is undertaken and which produces Māori knowledge, albeit measured against mainstream standards for
p.002009: research.
...
Political / political affiliation
Searching for indicator party:
(return to top)
p.000012: and capable)
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Cultural/intellectual property rights, Te Ao Māori (Māori world), the right to participate in society as Māori, whānau
p.000012: ora (family health)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
p.000012: The framework considers that both the research design and the cultural and social responsibility of the
p.000012: researchers have an immediate influence on the likely outcomes of the research project and should be considered during
p.000012: ethical deliberations.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 2: Māori ethical framework
p.000012:
p.000012: The Māori ethics framework references four tikanga based principles (whakapapa (relationships), tika
p.000012: (research design), manaakitanga (cultural and social responsibility), and mana (justice and equity) as the
p.000012: primary ethical principles in relation to research ethics. Other ethical concepts and principles are
p.000012: located within this framework and the ethical issues within each segment are identified and cross-referenced to
p.000012: the Ministry of Health’s Operational Standard for Ethics Committees10.
p.000012:
p.000012: Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
p.000012: quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
...
Political / vulnerable
Searching for indicator vulnerable:
(return to top)
p.002009: NEAC, the HRC and Ngā Pae o te Māramatanga establish a collaborative relationship to facilitate development of a Māori
p.002009: Framework for health and disability research ethics
p.002009: Pū Tai Ora hui, themes discussed include Māori members’ role, quality of consultation/representation, need for
p.002009: consensus/consistency, frameworks/models for decision-making on Māori ethical issues, need for more information in a
p.002009: number of areas
p.002009: Completion of NEAC contracted stocktake on how the central issues in New Zealand and other countries have so far been
p.002009: addressed (Kennedy & Wehipeihana, 2006)
p.002009: Hui Whakapiripiri, discussed Ngai Tahu ethics, Rod Lea effect, ethical issues for Māori, role of Māori EC members
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Meeting of NEAC, HRC and Ngā Pae o te Māramatanga, agreed new project plan and next steps in project
p.002009: HRC updates its 1998 Guidelines for Researchers on Health Research Involving Māori (Health Research Council, 2008).
p.002009: Mason Durie, 9th Global Forum on Bioethics in Research. The Ethics of Indigenous Peoples and Vulnerable Populations
p.002009: Maui Hudson & Khyla Russell, The Treaty of Waitangi and Research Ethics
p.002009:
p.002009: 22 Te Ara Tika
p.002009:
p.002009: Appendix B: Māori Ethical Frameworks
p.002009:
p.002009: Kaa Williams Te Pa Harakeke o te Tangata
p.002009:
p.002009: Manuka Henare Koru of Māori ethics
p.002009:
p.002009: Hugh Kawharu Te noho kotahitanga
p.002009:
p.002009: Hirini Moko Mead Tikanga tests
p.002009:
p.002009: Linda Smith Kaupapa Māori practices
p.002009:
p.002009: Mason Durie Rangahau painga
p.002009:
p.002009: Stephanie Palmer Homai te waiora ki ahau
p.002009:
p.002009: Te Ara Tika 23
p.002009:
p.002009: Appendix C: Characteristics of Māori research
p.002009:
p.002009:
p.002009:
p.002009:
p.002009: Characteristics
p.002009: Research Involving Māori
p.002009: Māori-Centred Research
p.002009: Kaupapa Māori Research
p.002009:
p.002009:
p.002009: Description
p.002009: Research where Māori are involved as participants or subjects, or possibly as junior members of a research team;
p.002009: Research where Māori data is sought and analysed; Research where Māori may be trained in contemporary research methods
p.002009: and mainstream analysis.
p.002009: Research where Māori are significant participants, and are typically senior members of research teams; Research where a
p.002009: Māori analysis is undertaken and which produces Māori knowledge, albeit measured against mainstream standards for
p.002009: research.
...
Health / Drug Usage
Searching for indicator influence:
(return to top)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
p.000012: The framework considers that both the research design and the cultural and social responsibility of the
p.000012: researchers have an immediate influence on the likely outcomes of the research project and should be considered during
p.000012: ethical deliberations.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 2: Māori ethical framework
p.000012:
p.000012: The Māori ethics framework references four tikanga based principles (whakapapa (relationships), tika
p.000012: (research design), manaakitanga (cultural and social responsibility), and mana (justice and equity) as the
p.000012: primary ethical principles in relation to research ethics. Other ethical concepts and principles are
p.000012: located within this framework and the ethical issues within each segment are identified and cross-referenced to
p.000012: the Ministry of Health’s Operational Standard for Ethics Committees10.
p.000012:
p.000012: Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
p.000012: quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
p.000012: researchers before ethics committee members consider ethical approval for the research project. The middle quadrant
p.000012: refers to good practice which indicates a more Māori responsive approach to the research project. Best practice
...
Health / Mentally Disabled
Searching for indicator disability:
(return to top)
p.000012: (justice and equity, reflected through power and authority). As the environment changes or new situations arise,
p.000012: tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
p.000012: interface for accessing repositories of cultural knowledge and experience that can be used to inform
p.000012: ethical deliberations. Tikanga also provides a framework through which Māori can actively engage with
p.000012: ethical issues and consider the effect research may have on their values or relationships.
p.000012:
p.000012: Purpose
p.000012:
p.000012: Articulating the ethical dimensions of tikanga as they relate to particular research proposals is
p.000012: a necessary step to support Māori members of ethics committees to fulfil their kaitiaki (guardian/advocate)
p.000012: responsibilities. It should also be of assistance to ethics committees in the course of the ethical
p.000012: deliberations and researchers more generally as a guide to Māori ethical understandings and perspectives. It
p.000012: will improve the capacity of key personnel within the system of ethical review to respond more appropriately to
p.000012: Māori issues and, in doing so, enhance Māori communities’ confidence and trust in the decisions made by both
p.000012: institutional and health and disability ethics committees. In summary, this framework has four main objectives:
p.000012:
p.000012: • to explain key ethical concepts for Māori;
p.000012: • to support decision-making around Māori ethical issues;
p.000012: • to identify ways to address Māori ethical concerns, and
p.000012: • to clarify the kaitiaki roles of Māori ethics committee members.
p.000012:
p.000012: There have been consistent messages about the dual responsibilities of Māori ethics committee members. As
p.000012: defined by the Ministry of Health’s Operational Standard for Ethics Committees (2006)9 the Māori ethics
p.000012: committee member sits alongside other members of the committee to implement the principles of ethical review.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 8 Te Puni Kokiri (1994). Health sector ethics: Nga tikanga pono wahanga hauora: Mechanisms for Māori into ethical
p.000012: review, Wellington, New Zealand, Ministry of Māori Development.
p.000012: 9 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry
p.000012: of Health.
p.000012:
p.000012: Te Ara Tika 3
p.000012: In addition, whānau/hapū/iwi (family/kinship group/tribe) expect Māori members of ethics committee to act as
...
p.002003: Pū Tai Ora meeting
p.002003: Fiona Cram, Rangahau Māori: Tona tika tona pono – The validity and integrity of Māori researchers
p.002003: Kiri Powick, Nga Take Matatika mo te mahi Rangahau Māori. Māori research ethics: a literature review of the ethical
p.002003: issues and implications of kaupapa Māori research and Research involving Māori for Researchers, Supervisors and Ethics
p.002003: Committees
p.002003: Pū Tai Ora wananga at Te Herenga Waka Marae, Victoria University, Wellington
p.002003: Fiona Cram, Preliminary discussions with key Māori informants
p.002003:
p.002003: Te Ara Tika 21
p.002003:
p.002003:
p.002003: Date
p.002003:
p.002003: 2003
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002005: 2005
p.002005:
p.002005:
p.002005:
p.002006: 2006
p.002006:
p.002006:
p.002006: 2006
p.002006:
p.002006: 2006
p.002006:
p.002007: 2007
p.002007:
p.002007: 2007
p.002007:
p.002008: 2008
p.002008:
p.002008: 2008
p.002008:
p.002009: 2009
p.002009: Hui/Publication
p.002009:
p.002009: Hirini Moko Mead, Tikanga Māori: Living by Māori values
p.002009: Andrew Sporle & Jonathon Koea, Māori Responsiveness in health and medical research
p.002009: Mātauranga Tuku Iho Tikanga Rangahau, Ngā Pae o te Māramatanga hosts a Traditional Knowledge and Research Ethics
p.002009: Conference in Wellington
p.002009: Maui Hudson, He Matatika Māori: Māori and Ethical Review of Health Research
p.002009: Rachel Robson, Māori framework for ethical review of health and disability research: Scoping report to the National
p.002009: Advisory Committee on Health and Disability Ethics
p.002009: NEAC, the HRC and Ngā Pae o te Māramatanga establish a collaborative relationship to facilitate development of a Māori
p.002009: Framework for health and disability research ethics
p.002009: Pū Tai Ora hui, themes discussed include Māori members’ role, quality of consultation/representation, need for
p.002009: consensus/consistency, frameworks/models for decision-making on Māori ethical issues, need for more information in a
p.002009: number of areas
p.002009: Completion of NEAC contracted stocktake on how the central issues in New Zealand and other countries have so far been
p.002009: addressed (Kennedy & Wehipeihana, 2006)
p.002009: Hui Whakapiripiri, discussed Ngai Tahu ethics, Rod Lea effect, ethical issues for Māori, role of Māori EC members
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Pū Tai Ora hui, meeting of the Māori and Pacific members of the Health and Disability Ethics Committees
p.002009: Meeting of NEAC, HRC and Ngā Pae o te Māramatanga, agreed new project plan and next steps in project
p.002009: HRC updates its 1998 Guidelines for Researchers on Health Research Involving Māori (Health Research Council, 2008).
p.002009: Mason Durie, 9th Global Forum on Bioethics in Research. The Ethics of Indigenous Peoples and Vulnerable Populations
p.002009: Maui Hudson & Khyla Russell, The Treaty of Waitangi and Research Ethics
p.002009:
p.002009: 22 Te Ara Tika
p.002009:
p.002009: Appendix B: Māori Ethical Frameworks
p.002009:
p.002009: Kaa Williams Te Pa Harakeke o te Tangata
p.002009:
p.002009: Manuka Henare Koru of Māori ethics
p.002009:
p.002009: Hugh Kawharu Te noho kotahitanga
p.002009:
p.002009: Hirini Moko Mead Tikanga tests
p.002009:
p.002009: Linda Smith Kaupapa Māori practices
p.002009:
p.002009: Mason Durie Rangahau painga
p.002009:
p.002009: Stephanie Palmer Homai te waiora ki ahau
p.002009:
p.002009: Te Ara Tika 23
p.002009:
p.002009: Appendix C: Characteristics of Māori research
p.002009:
p.002009:
p.002009:
p.002009:
p.002009: Characteristics
p.002009: Research Involving Māori
p.002009: Māori-Centred Research
p.002009: Kaupapa Māori Research
p.002009:
p.002009:
p.002009: Description
...
Health / Motherhood/Family
Searching for indicator family:
(return to top)
p.000012: institutional and health and disability ethics committees. In summary, this framework has four main objectives:
p.000012:
p.000012: • to explain key ethical concepts for Māori;
p.000012: • to support decision-making around Māori ethical issues;
p.000012: • to identify ways to address Māori ethical concerns, and
p.000012: • to clarify the kaitiaki roles of Māori ethics committee members.
p.000012:
p.000012: There have been consistent messages about the dual responsibilities of Māori ethics committee members. As
p.000012: defined by the Ministry of Health’s Operational Standard for Ethics Committees (2006)9 the Māori ethics
p.000012: committee member sits alongside other members of the committee to implement the principles of ethical review.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 8 Te Puni Kokiri (1994). Health sector ethics: Nga tikanga pono wahanga hauora: Mechanisms for Māori into ethical
p.000012: review, Wellington, New Zealand, Ministry of Māori Development.
p.000012: 9 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry
p.000012: of Health.
p.000012:
p.000012: Te Ara Tika 3
p.000012: In addition, whānau/hapū/iwi (family/kinship group/tribe) expect Māori members of ethics committee to act as
p.000012: kaitiaki by understanding Māori ethical concerns, advocating for Māori ethical issues, and protecting Māori interests.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Principles of ethical review
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Kaitiaki (brave, competent
p.000012: and capable)
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Cultural/intellectual property rights, Te Ao Māori (Māori world), the right to participate in society as Māori, whānau
p.000012: ora (family health)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
p.000012: The framework considers that both the research design and the cultural and social responsibility of the
...
p.000012: This framework helps to clarify key ethical concepts for Māori and in doing so supports decision-making around Māori
p.000012: ethical issues. It does not replace ethical deliberation but enhances the process by framing Māori ethical
p.000012: issues in a way that aligns to the expectations of Māori communities. The Māori ethical framework
p.000012: should be used in conjunction with the Ministry of Health’s Operational Standard for Ethics Committees
p.000012: (2006) and the majority of the concepts and issues identified within the Māori ethical framework are
p.000012: referenced within the Operational Standard for Ethics Committees. To gain a fuller appreciation of Māori ethical
p.000012: concepts, issues and concerns, additional training should be undertaken.
p.000012:
p.000012: Te Ara Tika 19
p.000012:
p.000012: Glossary of Māori terms
p.000012:
p.000012: Disclaimer: Many of the descriptions used in this glossary are specific interpretations for the purposes of this
p.000012: document and do not denote the fullness of meaning normally associated with the word or term.
p.000012:
p.000012: Tikanga Protocols and practises
p.000012: Kawa Primary values
p.000012: Mana Justice and equity, reflected through power and
p.000012: authority
p.000012: Kaitiaki Guardian/advocate
p.000012: Whānau Family, including extended, may not be blood ties
p.000012: Te Ao Māori Māori world
p.000012: Whānau ora Family health
p.000012: Mātauranga Traditional knowledge
p.000012: Whakapapa Relationships
p.000012: Tika Research design
p.000012: Manaakitanga Cultural and social responsibility
p.000012: Whakapono Faith
p.000012: Tūmanako Aspirations
p.000012:
p.000012: Aroha
p.000012: Aro ki te ha
p.000012: Care Awareness
p.000012: Tapu Restricted
p.000012: Noa Unrestricted
p.000012: Kia Tūpato To be careful
p.000012: Kia āta-whakaaro Precise analysis
p.000012: Kia āta-korero Robust discussion
p.000012: Kia āta-whiriwhiri Consciously determine
p.000012: Kia āta-haere Proceed with understanding
p.000012: Kaupapa Topic, purpose
p.000012: Kia aroha ki a Tangaroa To be careful and aware of the potential dangers in
p.000012: the sea
p.000012: Mai i te whai ao ki te Ao Marama Moving towards understanding Whakatauki
p.000012: Proverb
p.000012: Mana Whenua Regional authority, customary title over land
p.000012: Kanohi ki te kanohi Face to face
p.000012: Kaumātua Elder
...
Social / Access to Social Goods
Searching for indicator access:
(return to top)
p.000012: • for whom is the study worthy and relevant?
p.000012: • who says so?
p.000012: • what knowledge will the community gain from this study?
p.000012: • what are some likely positive outcomes from this study?
p.000012: • what are some possible negative outcomes?
p.000012: • how can the negative outcomes be eliminated?
p.000012: • to whom is the researcher accountable?
p.000012: • what processes are in place to support the research, the researched and the researcher?38
p.000012:
p.000012: Note: The TIKA segment is what contextualises the Māori ethics framework to research. The framework may
p.000012: have utility in other areas (e.g. environmental, assisted reproductive technology) by adapting this section.
p.000012:
p.000012: Manaakitanga – Mā wai e manaaki tēnei kaupapa?39
p.000012:
p.000012: The concept of manaakitanga encompasses a range of meanings in a traditional sense with a central focus on ensuring
p.000012: the mana of both parties is upheld. In this context it is associated with notions of cultural and social
p.000012: responsibility40 and respect for persons41.
p.000012:
p.000012: Minimum Standard: Cultural Sensitivity
p.000012:
p.000012: The minimum standard for manaakitanga acknowledges a persons inherent dignity42 and the responsibility that people
p.000012: have to act in a caring manner towards others. The responsibility to protect and care for people with aroha
p.000012: and be aware of issues of cultural sensitivity comes to the fore. In this context it includes access to appropriate
p.000012: advice (e.g. kaumātua (elder), advocate)43 44 and respect for concepts of privacy and confidentiality45.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 34 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 35 Ministry of Health (2006). 2.4.61, p. 14.
p.000012: 36 Ministry of Health (2006). 2.0.32, p. 6.
p.000012: 37 Ministry of Health (2006). Appendix 8, Participation 383, p. 79.
p.000012: 38 Smith, L. T., Decolonizing methodologies: Research and Indigenous peoples, New York: Zed Books, 1999, p.173.
p.000012: 39 Who will ensure respect is maintained?
p.000012: 40 Ministry of Health (2006). 2.7, p. 16.
p.000012: 41 Ministry of Health (2006). 2.1, p. 6.
p.000012: 42 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 43 Ministry of Health (2006). 2.1.24-26, p. 6.
p.000012: 44 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 45 Ministry of Health (2006). 2.3, p. 11.
p.000012:
p.000012: Te Ara Tika 11
p.000012:
p.000012: Concepts of privacy and confidentiality are altered when the individualised notion of autonomy is
p.000012: removed. Information is shared to provide support and increase the transparency and accountability
p.000012: between members of the community.
p.000012:
p.000012: While recognising the appropriateness of privacy and confidentiality to safeguard any harmful effects
p.000012: from disclosure of information, in many situations, the level of confidentiality can be negotiated
p.000012: with communities and participants. This may simply involve participants consenting to be named as part
p.000012: of the study and giving them the opportunity to remove or de-identify particular comments from the final report.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 5: Manaakitanga
p.000012:
p.000012: Questions asked should include:
p.000012: • are the participants being treated with dignity and respect?
p.000012: • will the participants have access to appropriate advice?
p.000012: • is privacy and confidentiality being applied appropriately?
p.000012:
p.000012: Good Practice: Cultural safety
p.000012:
p.000012: A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
p.000012: the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
p.000012: 48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
p.000012: Māori values and concepts50 51 52 53 54 indigenous values and concepts, and allowing for the use of whānau
p.000012: support55 56 and appropriate Māori protocols57.
p.000012:
p.000012: 46 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 47 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 48 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 49 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 50 Ministry of Health (2006). 1.5.14, p. 3.
p.000012:
p.000012: 12 Te Ara Tika
p.000012:
p.000012: Questions of relevance include:
p.000012: • are Māori values or concepts used within this research project?
p.000012: • how will Māori protocols be observed as part of the research project?
p.000012: • are whānau able to support participants within this project?
p.000012:
p.000012: Best Practice: Māhaki
p.000012:
p.000012: Manaakitanga is fully realized in the context of relationships. Here mana akiaki (empowerment)
...
p.000012: • where will the research be developed, undertaken, and with whom?
p.000012: • has there been engagement with mana whenua and in what capacity?
p.000012: • to whom must the researchers report back to besides funders/institutions?
p.000012: • what and where is the relevance to/for Māori in their ongoing development in this research?
p.000012: • does the research include the achievement of Māori goals as an outcome?
p.000012:
p.000012: Best practice: Mana whakahaere
p.000012:
p.000012: In regard to research mana whakahaere refers to the sharing of power and control in the research relationship with
p.000012: hapū, iwi or relevant Māori communities who assume the responsibility for the outcomes of the project. This
p.000012: presupposes engagement with Māori as mana whenua. Mana whakahaere represents Māori control within the research project
p.000012: and includes acknowledgement of iwi intellectual property84, their knowledge systems (Mātauranga Māori)85,
p.000012: ownership of research data86 87 88 and guardianship responsibilities in relation to the protection and dissemination
p.000012: of information from the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • is there evidence of engagement in a meaningful relationship with mana whenua, Mataawaka (Māori living
p.000012: within the area not related to local iwi), or iwi researchers?
p.000012: • how does this application protect Māori intellectual property?
p.000012: • has consent been gained to access/use of mātauranga Māori?
p.000012: • how is data ownership guaranteed under mana whakahaere?
p.000012: • whose intellectual property will/does this research become?
p.000012: • has mātauranga Māori contributed to the research and how is this evidenced?
p.000012: • who will own the data produced/collected/generated during the research?
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 77 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 78 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 79 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 80 Ministry of Health (2006). 2.2.40-1, p. 10.
p.000012: 81 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 82 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 83 Ministry of Health (2006). 2.7.78, p. 16.
p.000012: 84 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 85 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 86 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 87 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 88 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012:
p.000012: Te Ara Tika 15
p.000012:
p.000012: Special ethical considerations
p.000012:
p.000012: This section outlines areas of special ethical consideration.
p.000012:
p.000012: Collection and use of human tissue
p.000012: The body is considered tapu by Māori and Indigenous people generally. Researchers involved in health or
...
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Who are they
p.000012:
p.000012: Expertise/key interest areas
p.000012:
p.000012: Level of engagement in selection of Māori members
p.000012:
p.000012: Level of participation in consultation process
p.000012:
p.000012: Use of evaluation techniques e.g. risk assessment tool, checklist
p.000012:
p.000012: Relationships with other groups e.g. DHB representative
p.000012:
p.000012: Current process for feedback, discussion, reporting
p.000012:
p.000012: Capacity to engage in consultation, e.g. time, resources, expertise
p.000012:
p.000012: Willingness to engage with ethics committee
p.000012:
p.000012: Benefit sharing
p.000012: Equity and justice are ethical principles underpinning the importance of benefit-sharing. Research will also have a
p.000012: range of outcomes and part of the ethical deliberation is to consider the nature of the outcomes (risk
p.000012: versus benefit, short versus long term) and their relative distribution (researchers, participants, communities,
p.000012: society). Researchers will legitimately benefit from being involved in research but consideration should be given to
p.000012: how participants and their communities might also benefit from participation.
p.000012:
p.000012: Benefits to researchers
p.000012: • Status and reputation
p.000012: • Qualifications (Masters and PhD theses)
p.000012: • Personal advancement
p.000012: • Increasing networks
p.000012:
p.000012: Benefits to participants
p.000012: • Access to interventions
p.000012: • Opportunity to share experiences
p.000012: • Koha
p.000012: • Acknowledgement in publications
p.000012: • Copies of reports
p.000012:
p.000012: 18 Te Ara Tika
p.000012:
p.000012: Benefits to participant communities
p.000012: • Research capacity – research skills, understanding research processes
p.000012: • Access to interventions
p.000012: • Collection and protection of existing intellectual property
p.000012: • Knowledge advancement
p.000012: • Copies of reports
p.000012: • Sharing of new intellectual property
p.000012:
p.000012: Benefit to Māori
p.000012: • Community development , for example health promoting events
p.000012: • Researcher development, for example qualifications and research experience
p.000012: • Knowledge advancement, for example research outputs, hui (meetings/seminars) and wānanga (workshops/teaching
p.000012: sessions)
p.000012: • Development of mātauranga Māori
p.000012:
p.000012: Benefit to society
p.000012: • Knowledge advancement, for example research outputs, hui and wānanga
p.000012: • Inclusiveness and diversity within the research system
p.000012:
p.000012: Implementation
p.000012:
p.000012: This framework helps to clarify key ethical concepts for Māori and in doing so supports decision-making around Māori
p.000012: ethical issues. It does not replace ethical deliberation but enhances the process by framing Māori ethical
p.000012: issues in a way that aligns to the expectations of Māori communities. The Māori ethical framework
p.000012: should be used in conjunction with the Ministry of Health’s Operational Standard for Ethics Committees
p.000012: (2006) and the majority of the concepts and issues identified within the Māori ethical framework are
p.000012: referenced within the Operational Standard for Ethics Committees. To gain a fuller appreciation of Māori ethical
...
Social / Ethnicity
Searching for indicator ethnic:
(return to top)
p.000012: Māori participating in the study.
p.000012:
p.000012: On-going communication with donors/participants
p.000012: Beyond the initial consent process, it is also important to provide a communication channel so that donors
p.000012: and their families are able to find out what has happened to their tissue and for which research projects it has been
p.000012: included. This provides a mechanism for donors/participants to vary or withdraw their consent both for the actual study
p.000012: and future studies (if so consented).
p.000012:
p.000012: Interpretation of results
p.000012: Early genetic research focused on identifying single genes responsible for specific familial disorders. However,
p.000012: radical technological advancements such as high throughput testing and genome-wide scanning techniques have
p.000012: made it possible to examine complex conditions influenced by multiple genes and environmental
p.000012: factors to determine population susceptibility.
p.000012:
p.000012: 89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
p.000012: Production. International Social Science Journal. Accepted for publication.
p.000012:
p.000012: 16 Te Ara Tika
p.000012:
p.000012: The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
p.000012: research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
p.000012: there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
p.000012: through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
p.000012: incorrect terminology, for example ‘Māori genes’.
p.000012:
p.000012: Intellectual property
p.000012: Māori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
p.000012: Treaty of Waitangi (article two: protection of taonga (resources), the United Nations Declaration on the
p.000012: Rights of Indigenous Peoples91, the Waitangi Tribunal (Wai 262)92 and the Mataatua Declaration93 (an
p.000012: affirmation of kaitiakitanga in relation to the intellectual property rights of Māori).
p.000012:
p.000012: Of particular concern to Māori is research that involves the use of traditional plants and other natural resources.
p.000012: Specific concerns for Māori arise from the claiming of intellectual property over natural and cultural
p.000012: properties, and the exclusionary nature of these IP provisions. Traditional uses should never be impacted by IP
p.000012: patents.
p.000012:
...
p.002009:
p.002009: Manuka Henare Koru of Māori ethics
p.002009:
p.002009: Hugh Kawharu Te noho kotahitanga
p.002009:
p.002009: Hirini Moko Mead Tikanga tests
p.002009:
p.002009: Linda Smith Kaupapa Māori practices
p.002009:
p.002009: Mason Durie Rangahau painga
p.002009:
p.002009: Stephanie Palmer Homai te waiora ki ahau
p.002009:
p.002009: Te Ara Tika 23
p.002009:
p.002009: Appendix C: Characteristics of Māori research
p.002009:
p.002009:
p.002009:
p.002009:
p.002009: Characteristics
p.002009: Research Involving Māori
p.002009: Māori-Centred Research
p.002009: Kaupapa Māori Research
p.002009:
p.002009:
p.002009: Description
p.002009: Research where Māori are involved as participants or subjects, or possibly as junior members of a research team;
p.002009: Research where Māori data is sought and analysed; Research where Māori may be trained in contemporary research methods
p.002009: and mainstream analysis.
p.002009: Research where Māori are significant participants, and are typically senior members of research teams; Research where a
p.002009: Māori analysis is undertaken and which produces Māori knowledge, albeit measured against mainstream standards for
p.002009: research.
p.002009: Research where Māori are significant participants, and where the research team is typically all Māori; Research where a
p.002009: Māori analysis undertaken and which produces Māori knowledge; Research which primarily meets expectations and quality
p.002009: standards set by Māori.
p.002009:
p.002009:
p.002009: Examples
p.002009: Analysis of ethnic differentials in disease rates; genetic study of familial cancer.
p.002009: Longitudinal social science study of Māori households.
p.002009: Traditional study of cosmology; study of cultural specific aspects of determinants of health.
p.002009:
p.002009:
p.002009: Control
p.002009: Mainstream.
p.002009: Mainstream.
p.002009: Māori.
p.002009:
p.002009:
p.002009: Māori Participation
p.002009: Minor.
p.002009: Major.
p.002009: Major, possibly exclusive.
p.002009:
p.002009:
p.002009: Methods/tools
p.002009: Contemporary – mainstream.
p.002009: Contemporary – mainstream and Māori.
p.002009: Contemporary – mainstream and Māori.
p.002009:
p.002009:
p.002009: Analysis
p.002009: Mainstream.
p.002009: Māori.
...
Searching for indicator ethnicity:
(return to top)
p.000012:
p.000012: Te Ara Tika 9
p.000012:
p.000012: Respectful relations with Māori and mana whenua (regional authority) are vital in all research projects,
p.000012: whatever approach the research team decides to use. There are a continuum of approaches to research,
p.000012: each with varying degrees of responsiveness to Māori which reflect the responsibilities, roles,
p.000012: rights of researchers and Māori communities. In this framework approaches to research design, Kaupapa
p.000012: Māori, Māori- centred, and Mainstream, (see Appendix C) are considered in relation to the Treaty of
p.000012: Waitangi principles of partnership, participation and protection.
p.000012:
p.000012: Minimum standard: Mainstream
p.000012:
p.000012: A mainstream approach refers to research that may or may not have direct relevance to Māori and where Māori engage as
p.000012: research participants. In these situations researchers are expected to protect the rights and interests
p.000012: of Māori although there is little real involvement in the research process or outcomes. Using this research
p.000012: approach, a number of factors need to be considered when designing the research project including defining the
p.000012: purpose of the project22 23 and its relevance to Māori goals24 25. If Māori are involved as participants26 then
p.000012: it is important to consider the recruitment methods, for example kanohi-ki-te-kanohi (face to face) and the
p.000012: sampling frameworks, and whether it is relevant and appropriate to collect ethnicity data27. In this regard
p.000012: the collection of ethnicity data may not be of primary use to the research proposal itself but can provide valuable
p.000012: baseline data for other researchers or Māori communities.
p.000012:
p.000012: Questions asked should include:
p.000012: • In what way does this research project impact on Māori?
p.000012: • How will Māori be included in this project? Is this appropriate and respectful?
p.000012: • Do I need to consult with Māori for this project? If so, how do I do that?
p.000012:
p.000012: Good Practice: Māori-centred
p.000012:
p.000012: Research designs that give Māori a greater level of participation within the research process are
p.000012: encouraged. Māori-centred research involves Māori as significant participants in various roles, including research
p.000012: team and participants, and possibly analysis and outcomes. Issues to be considered when using this
p.000012: research approach include Māori involvement in research design28 29, the role of mentors and
p.000012: Māori researcher development30, use of sampling frameworks that allow equal explanatory power31 and Māori
p.000012: involvement in analysis32 33.
p.000012:
p.000012: Questions of relevance include:
p.000012: • how will Māori be involved in this project? As researchers, participants, advisors?
p.000012: • how will this research project benefit Māori in all of the above?
p.000012: • is there adequate participation of Māori in different stages of the research project, including research design,
p.000012: analysis and dissemination of the results?
p.000012:
p.000012: 22 Ministry of Health (2006). 2.4.57, p. 13.
p.000012: 23 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 24 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 25 Ministry of Health (2006). Appendix 8, Participation 383, p.79.
p.000012: 26 Ministry of Health (2006). 2.6.74, pp. 15-6.
...
p.000012: an appropriate community/collective for the study to take place (via consultation) and secondly, those of individual
p.000012: Māori participating in the study.
p.000012:
p.000012: On-going communication with donors/participants
p.000012: Beyond the initial consent process, it is also important to provide a communication channel so that donors
p.000012: and their families are able to find out what has happened to their tissue and for which research projects it has been
p.000012: included. This provides a mechanism for donors/participants to vary or withdraw their consent both for the actual study
p.000012: and future studies (if so consented).
p.000012:
p.000012: Interpretation of results
p.000012: Early genetic research focused on identifying single genes responsible for specific familial disorders. However,
p.000012: radical technological advancements such as high throughput testing and genome-wide scanning techniques have
p.000012: made it possible to examine complex conditions influenced by multiple genes and environmental
p.000012: factors to determine population susceptibility.
p.000012:
p.000012: 89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
p.000012: Production. International Social Science Journal. Accepted for publication.
p.000012:
p.000012: 16 Te Ara Tika
p.000012:
p.000012: The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
p.000012: research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
p.000012: there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
p.000012: through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
p.000012: incorrect terminology, for example ‘Māori genes’.
p.000012:
p.000012: Intellectual property
p.000012: Māori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
p.000012: Treaty of Waitangi (article two: protection of taonga (resources), the United Nations Declaration on the
p.000012: Rights of Indigenous Peoples91, the Waitangi Tribunal (Wai 262)92 and the Mataatua Declaration93 (an
p.000012: affirmation of kaitiakitanga in relation to the intellectual property rights of Māori).
p.000012:
p.000012: Of particular concern to Māori is research that involves the use of traditional plants and other natural resources.
p.000012: Specific concerns for Māori arise from the claiming of intellectual property over natural and cultural
...
Social / Incarcerated
Searching for indicator restricted:
(return to top)
p.000012: the Ministry of Health’s Operational Standard for Ethics Committees10.
p.000012:
p.000012: Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
p.000012: quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
p.000012: researchers before ethics committee members consider ethical approval for the research project. The middle quadrant
p.000012: refers to good practice which indicates a more Māori responsive approach to the research project. Best practice
p.000012: extends the ethical consideration to align with expectations of behaviour within Te Ao Māori.
p.000012:
p.000012: The axis between the segments provides further opportunity to link the ethical issues to the rights, roles and
p.000012: responsibilities associated with the Treaty of Waitangi, the principles themselves (partnership, participation
p.000012: and protection), a risk/benefit/outcome continuum, and the Māori values of whakapono (faith), tūmanako
p.000012: (aspirations) and aroha (awareness).
p.000012:
p.000012:
p.000012:
p.000012: 10 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry of Health.
p.000012:
p.000012: Te Ara Tika 5
p.000012:
p.000012: The process of ethical review can be thought of in terms of tapu (restricted) and noa (unrestricted).
p.000012: The concept of kia tūpato (to be careful) becomes the starting point for considering the value or potential
p.000012: benefit of a research project. Kia āta-whakaaro (precise analysis) and kia āta-korero (robust discussion)
p.000012: of the practical/ethical/spiritual dimensions of any project is necessary to provide a foundation to kia
p.000012: āta-whiriwhiri (consciously determine) the conditions which allow the project to kia āta-haere (proceed with
p.000012: understanding).
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: TAPU€ kia tūpato € Āta – whakaaro € Āta – korero €
p.000012: Āta - whiriwhiri € Āta – haere € NOA
p.000012:
p.000012:
p.000012:
p.000012: RESTRICTED € careful consideration € precise analysis € robust discussion € determine these conditions € proceed with
p.000012: understanding € UNRESTRICTED
p.000012:
p.000012: 6 Te Ara Tika
p.000012:
p.000012: Whakapapa – He aha te whakapapa o tēnei kaupapa?11
p.000012:
p.000012: Whakapapa is used to explain both the genesis and purpose of any particular kaupapa (topic/purpose).
p.000012: Whakapapa is an analytical tool for not only understanding why relationships have been formed but
p.000012: also monitoring how the relationships progress and develop over time (mai i te whai ao ki te ao mārama).
p.000012: Within the context of decision- making about ethics, whakapapa refers to quality of relationships and the
p.000012: structures or processes that have been established to support these relationships. In research, the
p.000012: development and maintenance of meaningful relationships between researcher and research participant
p.000012: forms another axis of consideration for evaluating the ethical tenor of a research project and its associated activity.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 3: Whakapapa
p.000012:
p.000012: Minimum standard: Consultation
p.000012:
p.000012: An element of aroha (care) or aro ki te ha (awareness) involves acknowledging the essence of the environment within
p.000012: which a person operates. In a traditional context, a person going fishing or diving might be cautioned with
p.000012: the phrase ‘Kia aroha ki a Tangaroa’ (to be careful and aware of the potential dangers in the sea). Within this
...
p.000012: document and do not denote the fullness of meaning normally associated with the word or term.
p.000012:
p.000012: Tikanga Protocols and practises
p.000012: Kawa Primary values
p.000012: Mana Justice and equity, reflected through power and
p.000012: authority
p.000012: Kaitiaki Guardian/advocate
p.000012: Whānau Family, including extended, may not be blood ties
p.000012: Te Ao Māori Māori world
p.000012: Whānau ora Family health
p.000012: Mātauranga Traditional knowledge
p.000012: Whakapapa Relationships
p.000012: Tika Research design
p.000012: Manaakitanga Cultural and social responsibility
p.000012: Whakapono Faith
p.000012: Tūmanako Aspirations
p.000012:
p.000012: Aroha
p.000012: Aro ki te ha
p.000012: Care Awareness
p.000012: Tapu Restricted
p.000012: Noa Unrestricted
p.000012: Kia Tūpato To be careful
p.000012: Kia āta-whakaaro Precise analysis
p.000012: Kia āta-korero Robust discussion
p.000012: Kia āta-whiriwhiri Consciously determine
p.000012: Kia āta-haere Proceed with understanding
p.000012: Kaupapa Topic, purpose
p.000012: Kia aroha ki a Tangaroa To be careful and aware of the potential dangers in
p.000012: the sea
p.000012: Mai i te whai ao ki te Ao Marama Moving towards understanding Whakatauki
p.000012: Proverb
p.000012: Mana Whenua Regional authority, customary title over land
p.000012: Kanohi ki te kanohi Face to face
p.000012: Kaumātua Elder
p.000012: Mana Akiaki Empowerment
p.000012: Māhaki Respectful conduct
p.000012: Whakawātea Realignment
p.000012: Mana Tangata Autonomous individual
p.000012: Rohe pōtae Tribal area
p.000012: Mana whakahaere Shared power and control of outcomes and
p.000012: dissemination
p.000012: Tangata whenua People of the land
p.000012: Mataawaka Māori living within the area not related to local iwi
p.000012: Taonga Resources
...
Social / Marital Status
Searching for indicator single:
(return to top)
p.000012: particular, explicit consents should be sought for:
p.000012:
p.000012: • ongoing storage in tissue banks
p.000012: • the establishment of cell lines
p.000012: • tissue being sent overseas
p.000012: • use within genetic studies
p.000012: • future use
p.000012:
p.000012: Māori favour the recognition of both individual and collective consents as some ethical issues can be
p.000012: usefully considered and consented to by an individual and other ethical issues require community
p.000012: engagement. A collective is likely to be involved in early decisions about the appropriateness of the study
p.000012: while an individual can decide once the study has begun whether or not they will participate89. This means
p.000012: that two forms of consent are required for research involving human tissue and/or genetic samples. Firstly, that of
p.000012: an appropriate community/collective for the study to take place (via consultation) and secondly, those of individual
p.000012: Māori participating in the study.
p.000012:
p.000012: On-going communication with donors/participants
p.000012: Beyond the initial consent process, it is also important to provide a communication channel so that donors
p.000012: and their families are able to find out what has happened to their tissue and for which research projects it has been
p.000012: included. This provides a mechanism for donors/participants to vary or withdraw their consent both for the actual study
p.000012: and future studies (if so consented).
p.000012:
p.000012: Interpretation of results
p.000012: Early genetic research focused on identifying single genes responsible for specific familial disorders. However,
p.000012: radical technological advancements such as high throughput testing and genome-wide scanning techniques have
p.000012: made it possible to examine complex conditions influenced by multiple genes and environmental
p.000012: factors to determine population susceptibility.
p.000012:
p.000012: 89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
p.000012: Production. International Social Science Journal. Accepted for publication.
p.000012:
p.000012: 16 Te Ara Tika
p.000012:
p.000012: The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
p.000012: research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
p.000012: there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
p.000012: through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
p.000012: incorrect terminology, for example ‘Māori genes’.
p.000012:
p.000012: Intellectual property
p.000012: Māori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
...
Social / Property Ownership
Searching for indicator property:
(return to top)
p.000012: defined by the Ministry of Health’s Operational Standard for Ethics Committees (2006)9 the Māori ethics
p.000012: committee member sits alongside other members of the committee to implement the principles of ethical review.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 8 Te Puni Kokiri (1994). Health sector ethics: Nga tikanga pono wahanga hauora: Mechanisms for Māori into ethical
p.000012: review, Wellington, New Zealand, Ministry of Māori Development.
p.000012: 9 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry
p.000012: of Health.
p.000012:
p.000012: Te Ara Tika 3
p.000012: In addition, whānau/hapū/iwi (family/kinship group/tribe) expect Māori members of ethics committee to act as
p.000012: kaitiaki by understanding Māori ethical concerns, advocating for Māori ethical issues, and protecting Māori interests.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Principles of ethical review
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Kaitiaki (brave, competent
p.000012: and capable)
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Cultural/intellectual property rights, Te Ao Māori (Māori world), the right to participate in society as Māori, whānau
p.000012: ora (family health)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
...
p.000012: • is there evidence of mana whenua goals, aspirations, development, or expectations?
p.000012: • how will these be measured and by whom?
p.000012: • where will the research be developed, undertaken, and with whom?
p.000012: • has there been engagement with mana whenua and in what capacity?
p.000012: • to whom must the researchers report back to besides funders/institutions?
p.000012: • what and where is the relevance to/for Māori in their ongoing development in this research?
p.000012: • does the research include the achievement of Māori goals as an outcome?
p.000012:
p.000012: Best practice: Mana whakahaere
p.000012:
p.000012: In regard to research mana whakahaere refers to the sharing of power and control in the research relationship with
p.000012: hapū, iwi or relevant Māori communities who assume the responsibility for the outcomes of the project. This
p.000012: presupposes engagement with Māori as mana whenua. Mana whakahaere represents Māori control within the research project
p.000012: and includes acknowledgement of iwi intellectual property84, their knowledge systems (Mātauranga Māori)85,
p.000012: ownership of research data86 87 88 and guardianship responsibilities in relation to the protection and dissemination
p.000012: of information from the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • is there evidence of engagement in a meaningful relationship with mana whenua, Mataawaka (Māori living
p.000012: within the area not related to local iwi), or iwi researchers?
p.000012: • how does this application protect Māori intellectual property?
p.000012: • has consent been gained to access/use of mātauranga Māori?
p.000012: • how is data ownership guaranteed under mana whakahaere?
p.000012: • whose intellectual property will/does this research become?
p.000012: • has mātauranga Māori contributed to the research and how is this evidenced?
p.000012: • who will own the data produced/collected/generated during the research?
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 77 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 78 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 79 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 80 Ministry of Health (2006). 2.2.40-1, p. 10.
p.000012: 81 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 82 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 83 Ministry of Health (2006). 2.7.78, p. 16.
p.000012: 84 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 85 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 86 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 87 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 88 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012:
p.000012: Te Ara Tika 15
p.000012:
p.000012: Special ethical considerations
p.000012:
p.000012: This section outlines areas of special ethical consideration.
p.000012:
p.000012: Collection and use of human tissue
p.000012: The body is considered tapu by Māori and Indigenous people generally. Researchers involved in health or
p.000012: medical research that involves the body, or any part of the body, such as organs, blood, hair, saliva and/or
...
p.000012: included. This provides a mechanism for donors/participants to vary or withdraw their consent both for the actual study
p.000012: and future studies (if so consented).
p.000012:
p.000012: Interpretation of results
p.000012: Early genetic research focused on identifying single genes responsible for specific familial disorders. However,
p.000012: radical technological advancements such as high throughput testing and genome-wide scanning techniques have
p.000012: made it possible to examine complex conditions influenced by multiple genes and environmental
p.000012: factors to determine population susceptibility.
p.000012:
p.000012: 89 Hudson, M. (2009). Think Globally, Act Locally: ‘Collective Consent’ and the Ethics of Knowledge
p.000012: Production. International Social Science Journal. Accepted for publication.
p.000012:
p.000012: 16 Te Ara Tika
p.000012:
p.000012: The association of genetic or biological susceptibility to disease with ethnicity is problematic for population based
p.000012: research. Due care should be taken when conducting ethnic specific analyses, particularly in genetic studies, as
p.000012: there is always the potential for community disruption, stigmatisation, stereotyping or undermining either
p.000012: through research processes or outcomes90. Care needs to be taken to avoid such harms through the use of
p.000012: incorrect terminology, for example ‘Māori genes’.
p.000012:
p.000012: Intellectual property
p.000012: Māori continue to assert their cultural and intellectual property (IP) rights through a range of mechanisms; the
p.000012: Treaty of Waitangi (article two: protection of taonga (resources), the United Nations Declaration on the
p.000012: Rights of Indigenous Peoples91, the Waitangi Tribunal (Wai 262)92 and the Mataatua Declaration93 (an
p.000012: affirmation of kaitiakitanga in relation to the intellectual property rights of Māori).
p.000012:
p.000012: Of particular concern to Māori is research that involves the use of traditional plants and other natural resources.
p.000012: Specific concerns for Māori arise from the claiming of intellectual property over natural and cultural
p.000012: properties, and the exclusionary nature of these IP provisions. Traditional uses should never be impacted by IP
p.000012: patents.
p.000012:
p.000012: Opportunities for the sharing of new intellectual property with Maori communities should be facilitated particularly
p.000012: where Maori analyses have contributed to the development of the intellectual property.
p.000012:
p.000012: Representation
p.000012: Māori ethics committee members, along with their respective colleagues need to assess the appropriateness
p.000012: of consulted parties and determine whether there are other potential organisations that should
p.000012: have been part of the engagement process. The following table identifies some criteria for assessing the
p.000012: appropriateness of the representative body.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 90 Hausman, D. (2008). Protecting groups from genetic research. Bioethics. Vol 22(3), pg 157-165.
p.000012: 91 UN General Assembly, United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the
p.000012: General Assembly, 2 October 2007, http://www.un.org/documents/instruments/docs_en.asp?type=declarat.
p.000012: 92 More information on this claim can be found on the Waitangi Tribunal website at: http://www.waitangi-
p.000012: tribunal.govt.nz/inquiries/genericinquiries2/florafauna/.
p.000012: 93 The Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples (1993).
p.000012: http://www.ngatiawa.iwi.nz/cms/CMSFiles/File/Associations/mataatua%20declaration.pdf.
p.000012:
p.000012: Te Ara Tika 17
p.000012:
p.000012: Table 1: Assessing appropriateness of Māori consultation
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Who are they
p.000012:
p.000012: Expertise/key interest areas
p.000012:
p.000012: Level of engagement in selection of Māori members
p.000012:
p.000012: Level of participation in consultation process
p.000012:
p.000012: Use of evaluation techniques e.g. risk assessment tool, checklist
p.000012:
p.000012: Relationships with other groups e.g. DHB representative
p.000012:
p.000012: Current process for feedback, discussion, reporting
p.000012:
p.000012: Capacity to engage in consultation, e.g. time, resources, expertise
p.000012:
p.000012: Willingness to engage with ethics committee
p.000012:
p.000012: Benefit sharing
p.000012: Equity and justice are ethical principles underpinning the importance of benefit-sharing. Research will also have a
p.000012: range of outcomes and part of the ethical deliberation is to consider the nature of the outcomes (risk
p.000012: versus benefit, short versus long term) and their relative distribution (researchers, participants, communities,
p.000012: society). Researchers will legitimately benefit from being involved in research but consideration should be given to
p.000012: how participants and their communities might also benefit from participation.
p.000012:
p.000012: Benefits to researchers
p.000012: • Status and reputation
p.000012: • Qualifications (Masters and PhD theses)
p.000012: • Personal advancement
p.000012: • Increasing networks
p.000012:
p.000012: Benefits to participants
p.000012: • Access to interventions
p.000012: • Opportunity to share experiences
p.000012: • Koha
p.000012: • Acknowledgement in publications
p.000012: • Copies of reports
p.000012:
p.000012: 18 Te Ara Tika
p.000012:
p.000012: Benefits to participant communities
p.000012: • Research capacity – research skills, understanding research processes
p.000012: • Access to interventions
p.000012: • Collection and protection of existing intellectual property
p.000012: • Knowledge advancement
p.000012: • Copies of reports
p.000012: • Sharing of new intellectual property
p.000012:
p.000012: Benefit to Māori
p.000012: • Community development , for example health promoting events
p.000012: • Researcher development, for example qualifications and research experience
p.000012: • Knowledge advancement, for example research outputs, hui (meetings/seminars) and wānanga (workshops/teaching
p.000012: sessions)
p.000012: • Development of mātauranga Māori
p.000012:
p.000012: Benefit to society
p.000012: • Knowledge advancement, for example research outputs, hui and wānanga
p.000012: • Inclusiveness and diversity within the research system
p.000012:
p.000012: Implementation
p.000012:
p.000012: This framework helps to clarify key ethical concepts for Māori and in doing so supports decision-making around Māori
p.000012: ethical issues. It does not replace ethical deliberation but enhances the process by framing Māori ethical
p.000012: issues in a way that aligns to the expectations of Māori communities. The Māori ethical framework
p.000012: should be used in conjunction with the Ministry of Health’s Operational Standard for Ethics Committees
p.000012: (2006) and the majority of the concepts and issues identified within the Māori ethical framework are
p.000012: referenced within the Operational Standard for Ethics Committees. To gain a fuller appreciation of Māori ethical
p.000012: concepts, issues and concerns, additional training should be undertaken.
p.000012:
p.000012: Te Ara Tika 19
p.000012:
p.000012: Glossary of Māori terms
p.000012:
p.000012: Disclaimer: Many of the descriptions used in this glossary are specific interpretations for the purposes of this
p.000012: document and do not denote the fullness of meaning normally associated with the word or term.
...
p.000012: Whakawātea Realignment
p.000012: Mana Tangata Autonomous individual
p.000012: Rohe pōtae Tribal area
p.000012: Mana whakahaere Shared power and control of outcomes and
p.000012: dissemination
p.000012: Tangata whenua People of the land
p.000012: Mataawaka Māori living within the area not related to local iwi
p.000012: Taonga Resources
p.000012: Wānanga Workshops, teaching sessions
p.000012: Hui Meetings, seminars
p.000012: Hapū Kinship group
p.000012: Iwi Tribe
p.000012:
p.000012: 20 Te Ara Tika
p.000012:
p.000012: Appendix A: Timeline of developments in Māori research ethics
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Date
p.000012:
p.001991: 1991
p.001993: 1993
p.001993:
p.001993: 1993
p.001993:
p.001994: 1994
p.001994: 1994
p.001996: 1996
p.001996: 1996
p.001997: 1997
p.001998: 1998
p.001998: 1998
p.001998:
p.001998: 1998/1999
p.001998:
p.001999: 1999
p.001999: 1999
p.001999:
p.002000: 2000
p.002001: 2001
p.002001:
p.002002: 2002
p.002002:
p.002002:
p.002002:
p.002002: 2002
p.002002:
p.002003: 2003
p.002003: Hui/Publication
p.002003:
p.002003: Ngahuia Te Awekotuku, he tikanga whakaaro
p.002003: First International Conference on the Cultural and Intellectual Property Rights of Indigenous Peoples (Whakatane)
p.002003: Māori Working Group on Health Sector Ethics established by the Ministry of Health
p.002003: Te Ara Ahu Whakamua, Māori Health Decade Hui Health Sector Ethics: Nga tikanga pono wahanga hauora Pū Tai Ora first
p.002003: meeting held
p.002003: Hui Whakapiripiri, Wellington (HRC)
p.002003: Hui Whakatipu/piripiri, Whaiora Marae, Otara, Auckland (HRC) Te Oru Rangahau Māori Research Conference, Palmerston
p.002003: North
p.002003: HRC produces Guidelines for Researchers on Health Research Involving Māori
p.002003: Pū Tai Ora – tikanga Māori, Māori ethical principles, training/education
p.002003: Linda Smith, Decolonising methodologies
p.002003: Te Puni Kokiri publishes Evaluation for Māori: Guidelines for Government agencies (Te Puni Kōkiri, 1999)
p.002003: Pū Tai Ora meeting
p.002003: Fiona Cram, Rangahau Māori: Tona tika tona pono – The validity and integrity of Māori researchers
p.002003: Kiri Powick, Nga Take Matatika mo te mahi Rangahau Māori. Māori research ethics: a literature review of the ethical
p.002003: issues and implications of kaupapa Māori research and Research involving Māori for Researchers, Supervisors and Ethics
p.002003: Committees
p.002003: Pū Tai Ora wananga at Te Herenga Waka Marae, Victoria University, Wellington
p.002003: Fiona Cram, Preliminary discussions with key Māori informants
p.002003:
p.002003: Te Ara Tika 21
p.002003:
p.002003:
p.002003: Date
p.002003:
p.002003: 2003
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004: 2004
p.002004:
p.002004:
p.002004: 2004
p.002004:
p.002004:
...
Social / Religion
Searching for indicator faith:
(return to top)
p.000012: (research design), manaakitanga (cultural and social responsibility), and mana (justice and equity) as the
p.000012: primary ethical principles in relation to research ethics. Other ethical concepts and principles are
p.000012: located within this framework and the ethical issues within each segment are identified and cross-referenced to
p.000012: the Ministry of Health’s Operational Standard for Ethics Committees10.
p.000012:
p.000012: Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
p.000012: quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
p.000012: researchers before ethics committee members consider ethical approval for the research project. The middle quadrant
p.000012: refers to good practice which indicates a more Māori responsive approach to the research project. Best practice
p.000012: extends the ethical consideration to align with expectations of behaviour within Te Ao Māori.
p.000012:
p.000012: The axis between the segments provides further opportunity to link the ethical issues to the rights, roles and
p.000012: responsibilities associated with the Treaty of Waitangi, the principles themselves (partnership, participation
p.000012: and protection), a risk/benefit/outcome continuum, and the Māori values of whakapono (faith), tūmanako
p.000012: (aspirations) and aroha (awareness).
p.000012:
p.000012:
p.000012:
p.000012: 10 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry of Health.
p.000012:
p.000012: Te Ara Tika 5
p.000012:
p.000012: The process of ethical review can be thought of in terms of tapu (restricted) and noa (unrestricted).
p.000012: The concept of kia tūpato (to be careful) becomes the starting point for considering the value or potential
p.000012: benefit of a research project. Kia āta-whakaaro (precise analysis) and kia āta-korero (robust discussion)
p.000012: of the practical/ethical/spiritual dimensions of any project is necessary to provide a foundation to kia
p.000012: āta-whiriwhiri (consciously determine) the conditions which allow the project to kia āta-haere (proceed with
p.000012: understanding).
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: TAPU€ kia tūpato € Āta – whakaaro € Āta – korero €
p.000012: Āta - whiriwhiri € Āta – haere € NOA
p.000012:
p.000012:
p.000012:
p.000012: RESTRICTED € careful consideration € precise analysis € robust discussion € determine these conditions € proceed with
p.000012: understanding € UNRESTRICTED
p.000012:
p.000012: 6 Te Ara Tika
p.000012:
p.000012: Whakapapa – He aha te whakapapa o tēnei kaupapa?11
p.000012:
p.000012: Whakapapa is used to explain both the genesis and purpose of any particular kaupapa (topic/purpose).
p.000012: Whakapapa is an analytical tool for not only understanding why relationships have been formed but
...
p.000012: risks?
p.000012: • is there clarity around potential future use of the samples or data?
p.000012: • does the reporting back of results reach its intended audience?
p.000012: • is there evidence of local consultation?
p.000012: • does the researcher have a good track record?
p.000012:
p.000012: Good Practice: Engagement
p.000012:
p.000012: We encourage researchers to move beyond consultation and look to substantial and positive engagement with
p.000012: Māori communities. This will ensure that Māori participation in the research project aligns with their tūmanako
p.000012: (aspirations) and tangible benefits are derived. Where research is clearly Māori centred and displays a
p.000012: focus on generating answers to questions that are of particular relevance and importance to Māori then
p.000012: additional features in the research protocol will be expected in terms of cultural safety and research design.
p.000012:
p.000012: Questions of relevance include:
p.000012: • what is the evidence for engagement with Māori and what was the shape, time scale and extent of
p.000012: this?
p.000012: • how has the consent issue been dealt with and is the mode of informed consent suggested
p.000012: appropriate?
p.000012:
p.000012: Best Practice: Kaitiaki
p.000012:
p.000012: A best practice level of ‘relationship’ empowers Māori to take a kaitiaki role within the research project with a
p.000012: view to ensuring that tangible outcomes are realised within Māori communities. A relationship displaying transparency,
p.000012: good faith, fairness and truthfulness is captured in the concept of whakapono (hope) and the whakatauki (proverb) “kia
p.000012: u ki te whakapono, kia aroha tetahi ki tetahi” (Hold strong to your beliefs and care for one another). Where research
p.000012: is framed by tenets of kaupapa Māori the above sets of requirements will be augmented by clear evidence that
p.000012: implications of using this methodology is transparently manifested right across the application and in all
p.000012: additional and supporting documents.
p.000012:
p.000012:
p.000012: 12 Ministry of Health (2006). 2.2.37, p. 9.
p.000012: 13 Ministry of Health (2006). Appendix 8, Partnership 381-382, p. 79.
p.000012: 14 Ministry of Health (2006). 2.2.33, p. 9.
p.000012: 15 Ministry of Health (2006). Appendix 8, Points to consider 386, p. 80.
p.000012: 16 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 17 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 18 Ministry of Health (2009). National Application Form for Ethical Approval of a Research Project v1, Section F,
p.000012: ‘Cultural and social responsibility’.
p.000012:
p.000012: 8 Te Ara Tika
p.000012:
p.000012: Of particular relevance here will be the development of mechanisms for Māori to have a governance role in the
p.000012: planning, development and execution of research as well as monitoring19 the project through its life cycle.
p.000012: The dissemination of results from the project will be focused on matters of relevance to Māori with information
p.000012: directed to an end use that shows clear benefits for Māori.
p.000012:
p.000012: Questions of relevance include:
p.000012: • is the use of kaupapa Māori research approach evidenced right through the application document?
...
p.000012:
p.000012: A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
p.000012: the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
p.000012: 48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
p.000012: Māori values and concepts50 51 52 53 54 indigenous values and concepts, and allowing for the use of whānau
p.000012: support55 56 and appropriate Māori protocols57.
p.000012:
p.000012: 46 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 47 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 48 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 49 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 50 Ministry of Health (2006). 1.5.14, p. 3.
p.000012:
p.000012: 12 Te Ara Tika
p.000012:
p.000012: Questions of relevance include:
p.000012: • are Māori values or concepts used within this research project?
p.000012: • how will Māori protocols be observed as part of the research project?
p.000012: • are whānau able to support participants within this project?
p.000012:
p.000012: Best Practice: Māhaki
p.000012:
p.000012: Manaakitanga is fully realized in the context of relationships. Here mana akiaki (empowerment)
p.000012: empowers partnerships whose quality is enhanced by the level of the parties’ faith and trust in each
p.000012: other (whakapono). Extending beyond cultural safety, māhaki (respectful conduct) acknowledges the
p.000012: importance of recognizing spiritual integrity58, Māori philosophy59, and may include processes like whakawātea
p.000012: (realignment) within the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • are kaumātua required to guide the research team?
p.000012: • how will researchers ensure the safe application of protocols?
p.000012:
p.000012: Mana – Kei a wai te mana mō tēnei kaupapa?60
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 6: Mana
p.000012:
p.000012:
p.000012: 51 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 52 Ministry of Health (2006). 2.5.66, p. 14.
p.000012: 53 Ministry of Health (2006). 2.7.79-81, p. 16.
p.000012: 54 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 55 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 56 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 57 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 58 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 59 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 60 Who has control over the project?
p.000012:
p.000012: Te Ara Tika 13
p.000012:
p.000012: Minimum standard: Mana tangata
p.000012:
...
p.000012: concepts, issues and concerns, additional training should be undertaken.
p.000012:
p.000012: Te Ara Tika 19
p.000012:
p.000012: Glossary of Māori terms
p.000012:
p.000012: Disclaimer: Many of the descriptions used in this glossary are specific interpretations for the purposes of this
p.000012: document and do not denote the fullness of meaning normally associated with the word or term.
p.000012:
p.000012: Tikanga Protocols and practises
p.000012: Kawa Primary values
p.000012: Mana Justice and equity, reflected through power and
p.000012: authority
p.000012: Kaitiaki Guardian/advocate
p.000012: Whānau Family, including extended, may not be blood ties
p.000012: Te Ao Māori Māori world
p.000012: Whānau ora Family health
p.000012: Mātauranga Traditional knowledge
p.000012: Whakapapa Relationships
p.000012: Tika Research design
p.000012: Manaakitanga Cultural and social responsibility
p.000012: Whakapono Faith
p.000012: Tūmanako Aspirations
p.000012:
p.000012: Aroha
p.000012: Aro ki te ha
p.000012: Care Awareness
p.000012: Tapu Restricted
p.000012: Noa Unrestricted
p.000012: Kia Tūpato To be careful
p.000012: Kia āta-whakaaro Precise analysis
p.000012: Kia āta-korero Robust discussion
p.000012: Kia āta-whiriwhiri Consciously determine
p.000012: Kia āta-haere Proceed with understanding
p.000012: Kaupapa Topic, purpose
p.000012: Kia aroha ki a Tangaroa To be careful and aware of the potential dangers in
p.000012: the sea
p.000012: Mai i te whai ao ki te Ao Marama Moving towards understanding Whakatauki
p.000012: Proverb
p.000012: Mana Whenua Regional authority, customary title over land
p.000012: Kanohi ki te kanohi Face to face
p.000012: Kaumātua Elder
p.000012: Mana Akiaki Empowerment
p.000012: Māhaki Respectful conduct
p.000012: Whakawātea Realignment
p.000012: Mana Tangata Autonomous individual
p.000012: Rohe pōtae Tribal area
p.000012: Mana whakahaere Shared power and control of outcomes and
p.000012: dissemination
...
Social / education
Searching for indicator educational:
(return to top)
p.000012: contribution that research makes towards providing useful and relevant outcomes; and addressing inequalities. All
p.000012: research in New Zealand is of interest to Māori, and research which includes Māori is of paramount
p.000012: importance to Māori.
p.000012:
p.000012: In a research context, to ignore the reality of inter-cultural difference is to live with outdated
p.000012: notions of scientific investigation. It is also likely to hamper the conduct of research, and limit the
p.000012: capacity of research to improve human development7.
p.000012:
p.000012:
p.000012: 2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
p.000012: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
p.000012: 3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
p.000012: medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
p.000012: amended by the 59th WMA General Assembly, Seoul, October 2008.
p.000012: 4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
p.000012:
p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
p.000012: Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
p.000012: (justice and equity, reflected through power and authority). As the environment changes or new situations arise,
p.000012: tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
...
General/Other / Impaired Autonomy
Searching for indicator autonomy:
(return to top)
p.000012: responsibility40 and respect for persons41.
p.000012:
p.000012: Minimum Standard: Cultural Sensitivity
p.000012:
p.000012: The minimum standard for manaakitanga acknowledges a persons inherent dignity42 and the responsibility that people
p.000012: have to act in a caring manner towards others. The responsibility to protect and care for people with aroha
p.000012: and be aware of issues of cultural sensitivity comes to the fore. In this context it includes access to appropriate
p.000012: advice (e.g. kaumātua (elder), advocate)43 44 and respect for concepts of privacy and confidentiality45.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 34 Ministry of Health (2006). 2.3.56, p. 12.
p.000012: 35 Ministry of Health (2006). 2.4.61, p. 14.
p.000012: 36 Ministry of Health (2006). 2.0.32, p. 6.
p.000012: 37 Ministry of Health (2006). Appendix 8, Participation 383, p. 79.
p.000012: 38 Smith, L. T., Decolonizing methodologies: Research and Indigenous peoples, New York: Zed Books, 1999, p.173.
p.000012: 39 Who will ensure respect is maintained?
p.000012: 40 Ministry of Health (2006). 2.7, p. 16.
p.000012: 41 Ministry of Health (2006). 2.1, p. 6.
p.000012: 42 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 43 Ministry of Health (2006). 2.1.24-26, p. 6.
p.000012: 44 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 45 Ministry of Health (2006). 2.3, p. 11.
p.000012:
p.000012: Te Ara Tika 11
p.000012:
p.000012: Concepts of privacy and confidentiality are altered when the individualised notion of autonomy is
p.000012: removed. Information is shared to provide support and increase the transparency and accountability
p.000012: between members of the community.
p.000012:
p.000012: While recognising the appropriateness of privacy and confidentiality to safeguard any harmful effects
p.000012: from disclosure of information, in many situations, the level of confidentiality can be negotiated
p.000012: with communities and participants. This may simply involve participants consenting to be named as part
p.000012: of the study and giving them the opportunity to remove or de-identify particular comments from the final report.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 5: Manaakitanga
p.000012:
p.000012: Questions asked should include:
p.000012: • are the participants being treated with dignity and respect?
p.000012: • will the participants have access to appropriate advice?
p.000012: • is privacy and confidentiality being applied appropriately?
p.000012:
p.000012: Good Practice: Cultural safety
p.000012:
p.000012: A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
p.000012: the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
p.000012: 48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
...
General/Other / Relationship to Authority
Searching for indicator authority:
(return to top)
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
p.000012:
p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
p.000012: Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
p.000012: (justice and equity, reflected through power and authority). As the environment changes or new situations arise,
p.000012: tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
p.000012: interface for accessing repositories of cultural knowledge and experience that can be used to inform
p.000012: ethical deliberations. Tikanga also provides a framework through which Māori can actively engage with
p.000012: ethical issues and consider the effect research may have on their values or relationships.
p.000012:
p.000012: Purpose
p.000012:
p.000012: Articulating the ethical dimensions of tikanga as they relate to particular research proposals is
p.000012: a necessary step to support Māori members of ethics committees to fulfil their kaitiaki (guardian/advocate)
p.000012: responsibilities. It should also be of assistance to ethics committees in the course of the ethical
p.000012: deliberations and researchers more generally as a guide to Māori ethical understandings and perspectives. It
p.000012: will improve the capacity of key personnel within the system of ethical review to respond more appropriately to
p.000012: Māori issues and, in doing so, enhance Māori communities’ confidence and trust in the decisions made by both
p.000012: institutional and health and disability ethics committees. In summary, this framework has four main objectives:
p.000012:
p.000012: • to explain key ethical concepts for Māori;
p.000012: • to support decision-making around Māori ethical issues;
...
p.000012: directed to an end use that shows clear benefits for Māori.
p.000012:
p.000012: Questions of relevance include:
p.000012: • is the use of kaupapa Māori research approach evidenced right through the application document?
p.000012: • what degree of meaningful input have Māori had in influencing the shape of the research?
p.000012: • are Māori participants and their iwi, hapū and whānau the prime recipients or contributors of
p.000012: results?
p.000012: • what mechanisms are in place to optimise benefits to participants?
p.000012: • is there an adequate monitoring mechanism?
p.000012:
p.000012: Tika – Me pehea e tika ai tēnei kaupapa?20
p.000012:
p.000012: Tika provides a general foundation for tikanga and in the Māori context refers to what is right and what is good for
p.000012: any particular situation. In the context of this framework we relate it to the validity of the research21
p.000012: proposal. The design of a research project is a critical determinant in whether the research is successful in
p.000012: achieving proposed outcomes, benefiting participants and communities, and bringing about positive
p.000012: transformative change.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 4: Tika
p.000012:
p.000012:
p.000012: 19 Ministry of Health (2006). Appendix 8, 378, p. 78.
p.000012: 20 How will the project proceed correctly?
p.000012: 21 Ministry of Health (2006). 2.4, p. 13.
p.000012:
p.000012: Te Ara Tika 9
p.000012:
p.000012: Respectful relations with Māori and mana whenua (regional authority) are vital in all research projects,
p.000012: whatever approach the research team decides to use. There are a continuum of approaches to research,
p.000012: each with varying degrees of responsiveness to Māori which reflect the responsibilities, roles,
p.000012: rights of researchers and Māori communities. In this framework approaches to research design, Kaupapa
p.000012: Māori, Māori- centred, and Mainstream, (see Appendix C) are considered in relation to the Treaty of
p.000012: Waitangi principles of partnership, participation and protection.
p.000012:
p.000012: Minimum standard: Mainstream
p.000012:
p.000012: A mainstream approach refers to research that may or may not have direct relevance to Māori and where Māori engage as
p.000012: research participants. In these situations researchers are expected to protect the rights and interests
p.000012: of Māori although there is little real involvement in the research process or outcomes. Using this research
p.000012: approach, a number of factors need to be considered when designing the research project including defining the
p.000012: purpose of the project22 23 and its relevance to Māori goals24 25. If Māori are involved as participants26 then
p.000012: it is important to consider the recruitment methods, for example kanohi-ki-te-kanohi (face to face) and the
p.000012: sampling frameworks, and whether it is relevant and appropriate to collect ethnicity data27. In this regard
p.000012: the collection of ethnicity data may not be of primary use to the research proposal itself but can provide valuable
...
p.000012: other (whakapono). Extending beyond cultural safety, māhaki (respectful conduct) acknowledges the
p.000012: importance of recognizing spiritual integrity58, Māori philosophy59, and may include processes like whakawātea
p.000012: (realignment) within the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • are kaumātua required to guide the research team?
p.000012: • how will researchers ensure the safe application of protocols?
p.000012:
p.000012: Mana – Kei a wai te mana mō tēnei kaupapa?60
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 6: Mana
p.000012:
p.000012:
p.000012: 51 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 52 Ministry of Health (2006). 2.5.66, p. 14.
p.000012: 53 Ministry of Health (2006). 2.7.79-81, p. 16.
p.000012: 54 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 55 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 56 Ministry of Health (2006). 2.7.77, p. 16.
p.000012: 57 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 58 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 59 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 60 Who has control over the project?
p.000012:
p.000012: Te Ara Tika 13
p.000012:
p.000012: Minimum standard: Mana tangata
p.000012:
p.000012: Mana in a Māori context refers to power and authority bestowed, gained or inherited individually and
p.000012: collectively. In the context of this framework mana relates to equity61 and distributive justice62. Mana acts
p.000012: as a barometer of the quality of relationships by acknowledging issues of power and authority in
p.000012: relation to who has rights, roles and responsibilities when considering the risks, benefits and outcomes of the
p.000012: project.
p.000012:
p.000012: Mana Tangata (autonomous individual), in the context of this framework, refers to individuals that choose
p.000012: to participate in research and their right to be appropriately informed of risks to their individual or
p.000012: collective mana. As such consideration should be given to the identification of risks (individual/collective)63
p.000012: 64, fairness in terms of their distribution65 and the place of koha66 67. Providing clear understanding of the
p.000012: requirements for informed consent68, and recognising the place of oral consent in some Māori settings69 is integral to
p.000012: demonstrating respect for the mana of Māori participants.
p.000012:
p.000012: Questions asked should include:
p.000012: • how open/transparent has the process of consultation been?
p.000012: • how honestly and fully have the potential or real risks involved in this research been explained?
p.000012: • how equitable will the results be for Māori?
p.000012: • are the ideas behind koha understood?
p.000012: • is there evidence of:
p.000012: o equitable outcomes for Māori?
p.000012: o minimisation of harm?
p.000012: o fairness by appropriate inclusion of Māori?
p.000012: o engagement with the most appropriate groups to deliver favourable research outcomes?
p.000012:
p.000012: Good Practice: Mana whenua
p.000012:
p.000012: Mana whenua are iwi and hapū who are recognized as having regional authority and a primary role discerning benefits and
p.000012: making decisions around resource management and research being done in their rohe pōtae (tribal area)70 71
p.000012: 72. Researchers should be establishing meaningful relationships with mana whenua at
p.000012: the research design/conceptual stage to ensure the research provides outcomes for Māori73 74 75 and
p.000012: provides opportunities to explore benefit sharing arrangements76.
p.000012:
p.000012:
p.000012:
p.000012: 61 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 62 Ministry of Health (2006). 2.6, p. 15.
p.000012: 63 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 64 Ministry of Health (2006). 2.5.64-72, pp. 14-5.
p.000012: 65 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 66 Ministry of Health (2006). 2.2.43, p. 10.
p.000012: 67 Ministry of Health (2006). 2.7.85-6, p. 17.
p.000012: 68 Ministry of Health (2006). 2.2, p. 7.
p.000012: 69 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 70 Ministry of Health (2006). 2.0.23, p. 6.
p.000012: 71 Ministry of Health (2006). 2.3.55, p. 12.
p.000012: 72 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 73 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 74 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 75 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 76 Ministry of Health (2006). 2.6.73, p. 15.
p.000012:
p.000012: 14 Te Ara Tika
p.000012:
p.000012: Recognizing the mandated authority of hapū and iwi77 78 79 acknowledges the role they have in dealing
p.000012: with issues around consent. It may be appropriate to recognise ethical requirements for ‘collective
p.000012: consent’80 81 82 83 in circumstances where risks to the collective are at least as serious as those to the
p.000012: individual participant.
p.000012:
p.000012: Questions of relevance include:
p.000012: • who will benefit from the research and how will this be evidenced?
p.000012: • have the contributions of mana whenua been acknowledged?
p.000012: • is there evidence of mana whenua goals, aspirations, development, or expectations?
p.000012: • how will these be measured and by whom?
p.000012: • where will the research be developed, undertaken, and with whom?
p.000012: • has there been engagement with mana whenua and in what capacity?
p.000012: • to whom must the researchers report back to besides funders/institutions?
p.000012: • what and where is the relevance to/for Māori in their ongoing development in this research?
p.000012: • does the research include the achievement of Māori goals as an outcome?
p.000012:
p.000012: Best practice: Mana whakahaere
p.000012:
p.000012: In regard to research mana whakahaere refers to the sharing of power and control in the research relationship with
p.000012: hapū, iwi or relevant Māori communities who assume the responsibility for the outcomes of the project. This
p.000012: presupposes engagement with Māori as mana whenua. Mana whakahaere represents Māori control within the research project
p.000012: and includes acknowledgement of iwi intellectual property84, their knowledge systems (Mātauranga Māori)85,
...
p.000012: • Knowledge advancement, for example research outputs, hui and wānanga
p.000012: • Inclusiveness and diversity within the research system
p.000012:
p.000012: Implementation
p.000012:
p.000012: This framework helps to clarify key ethical concepts for Māori and in doing so supports decision-making around Māori
p.000012: ethical issues. It does not replace ethical deliberation but enhances the process by framing Māori ethical
p.000012: issues in a way that aligns to the expectations of Māori communities. The Māori ethical framework
p.000012: should be used in conjunction with the Ministry of Health’s Operational Standard for Ethics Committees
p.000012: (2006) and the majority of the concepts and issues identified within the Māori ethical framework are
p.000012: referenced within the Operational Standard for Ethics Committees. To gain a fuller appreciation of Māori ethical
p.000012: concepts, issues and concerns, additional training should be undertaken.
p.000012:
p.000012: Te Ara Tika 19
p.000012:
p.000012: Glossary of Māori terms
p.000012:
p.000012: Disclaimer: Many of the descriptions used in this glossary are specific interpretations for the purposes of this
p.000012: document and do not denote the fullness of meaning normally associated with the word or term.
p.000012:
p.000012: Tikanga Protocols and practises
p.000012: Kawa Primary values
p.000012: Mana Justice and equity, reflected through power and
p.000012: authority
p.000012: Kaitiaki Guardian/advocate
p.000012: Whānau Family, including extended, may not be blood ties
p.000012: Te Ao Māori Māori world
p.000012: Whānau ora Family health
p.000012: Mātauranga Traditional knowledge
p.000012: Whakapapa Relationships
p.000012: Tika Research design
p.000012: Manaakitanga Cultural and social responsibility
p.000012: Whakapono Faith
p.000012: Tūmanako Aspirations
p.000012:
p.000012: Aroha
p.000012: Aro ki te ha
p.000012: Care Awareness
p.000012: Tapu Restricted
p.000012: Noa Unrestricted
p.000012: Kia Tūpato To be careful
p.000012: Kia āta-whakaaro Precise analysis
p.000012: Kia āta-korero Robust discussion
p.000012: Kia āta-whiriwhiri Consciously determine
p.000012: Kia āta-haere Proceed with understanding
p.000012: Kaupapa Topic, purpose
p.000012: Kia aroha ki a Tangaroa To be careful and aware of the potential dangers in
p.000012: the sea
p.000012: Mai i te whai ao ki te Ao Marama Moving towards understanding Whakatauki
p.000012: Proverb
p.000012: Mana Whenua Regional authority, customary title over land
p.000012: Kanohi ki te kanohi Face to face
p.000012: Kaumātua Elder
p.000012: Mana Akiaki Empowerment
p.000012: Māhaki Respectful conduct
p.000012: Whakawātea Realignment
p.000012: Mana Tangata Autonomous individual
p.000012: Rohe pōtae Tribal area
p.000012: Mana whakahaere Shared power and control of outcomes and
p.000012: dissemination
p.000012: Tangata whenua People of the land
p.000012: Mataawaka Māori living within the area not related to local iwi
p.000012: Taonga Resources
p.000012: Wānanga Workshops, teaching sessions
p.000012: Hui Meetings, seminars
p.000012: Hapū Kinship group
p.000012: Iwi Tribe
p.000012:
p.000012: 20 Te Ara Tika
p.000012:
p.000012: Appendix A: Timeline of developments in Māori research ethics
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Date
p.000012:
p.001991: 1991
p.001993: 1993
p.001993:
p.001993: 1993
p.001993:
p.001994: 1994
p.001994: 1994
p.001996: 1996
p.001996: 1996
p.001997: 1997
p.001998: 1998
p.001998: 1998
p.001998:
p.001998: 1998/1999
p.001998:
p.001999: 1999
p.001999: 1999
p.001999:
p.002000: 2000
p.002001: 2001
p.002001:
p.002002: 2002
p.002002:
p.002002:
p.002002:
...
General/Other / belmont
Searching for indicator belmont:
(return to top)
p.000011: 11
p.000011: Figure 6: Mana
p.000012: 12
p.000012: List of Tables
p.000012: Table 1: Assessing appropriateness of Māori consultation 17
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Guidelines for Māori research ethics:
p.000012: A framework for researchers and ethics committee members
p.000012:
p.000012:
p.000012: Me whakatika te matatika ki roto i te tikanga kia tika ai
p.000012:
p.000012:
p.000012:
p.000012: Te Ara Tika 1
p.000012:
p.000012: Introduction
p.000012:
p.000012: This document outlines a framework for addressing Māori ethical issues within the context of
p.000012: decision-making by ethics committee members. It draws on a foundation of tikanga Māori (Māori protocols
p.000012: and practices) and will be useful for researchers, ethics committee members and those who engage in
p.000012: consultation or advice about Māori ethical issues from a local, regional, national or international perspective.
p.000012:
p.000012: Context
p.000012:
p.000012: Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key
p.000012: behaviours, processes and methodologies used in research. International codes of ethics such as the
p.000012: Nuremburg Code (1947)2, the Helsinki Declaration (1964)3, the Belmont Report (1979)4 and, more recently, the UNESCO
p.000012: Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards
p.000012: and professional expectations for researchers.
p.000012:
p.000012: These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or
p.000012: experiences for participants and their communities. Despite formal processes and codes of ethics there is
p.000012: ongoing evidence of unethical research practice which highlights the importance of the researcher’s own
p.000012: credibility, trust, honesty and integrity vis-à-vis6 the research project and participants.
p.000012:
p.000012: Over the years Māori have contributed to the critiques of research practice and advocated for the inclusion of
p.000012: tikanga Māori as part of formal ethical decision-making processes (Appendix A). There are a range of
p.000012: models of Māori research ethics which guide researchers and ensure that tikanga and cultural concepts are
p.000012: acknowledged (Appendix B).
p.000012:
p.000012: The Treaty of Waitangi principles of partnership, participation and protection provide a framework for identifying
p.000012: Māori ethical issues in terms of; rights, roles and responsibilities of researchers and Māori communities; the
p.000012: contribution that research makes towards providing useful and relevant outcomes; and addressing inequalities. All
p.000012: research in New Zealand is of interest to Māori, and research which includes Māori is of paramount
p.000012: importance to Māori.
p.000012:
p.000012: In a research context, to ignore the reality of inter-cultural difference is to live with outdated
p.000012: notions of scientific investigation. It is also likely to hamper the conduct of research, and limit the
p.000012: capacity of research to improve human development7.
p.000012:
p.000012:
p.000012: 2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
p.000012: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
p.000012: 3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
p.000012: medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
p.000012: amended by the 59th WMA General Assembly, Seoul, October 2008.
p.000012: 4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
p.000012:
p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
p.000012: Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
...
General/Other / cultural difference
Searching for indicator culturally:
(return to top)
p.000012: removed. Information is shared to provide support and increase the transparency and accountability
p.000012: between members of the community.
p.000012:
p.000012: While recognising the appropriateness of privacy and confidentiality to safeguard any harmful effects
p.000012: from disclosure of information, in many situations, the level of confidentiality can be negotiated
p.000012: with communities and participants. This may simply involve participants consenting to be named as part
p.000012: of the study and giving them the opportunity to remove or de-identify particular comments from the final report.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 5: Manaakitanga
p.000012:
p.000012: Questions asked should include:
p.000012: • are the participants being treated with dignity and respect?
p.000012: • will the participants have access to appropriate advice?
p.000012: • is privacy and confidentiality being applied appropriately?
p.000012:
p.000012: Good Practice: Cultural safety
p.000012:
p.000012: A better standard of manaakitanga or cultural and social responsibility can be achieved by recognizing, in addition to
p.000012: the issues above, the importance of collective participation in establishing the goals and benefits (tūmanako)46 47
p.000012: 48 of a research project and its culturally safe implementation49. This is enhanced by considering the inclusion of
p.000012: Māori values and concepts50 51 52 53 54 indigenous values and concepts, and allowing for the use of whānau
p.000012: support55 56 and appropriate Māori protocols57.
p.000012:
p.000012: 46 Ministry of Health (2006). 2.7.82, p. 17.
p.000012: 47 Ministry of Health (2006). 2.6.73, p. 15.
p.000012: 48 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 49 Ministry of Health (2006). Appendix 8, Protection 384, p. 79.
p.000012: 50 Ministry of Health (2006). 1.5.14, p. 3.
p.000012:
p.000012: 12 Te Ara Tika
p.000012:
p.000012: Questions of relevance include:
p.000012: • are Māori values or concepts used within this research project?
p.000012: • how will Māori protocols be observed as part of the research project?
p.000012: • are whānau able to support participants within this project?
p.000012:
p.000012: Best Practice: Māhaki
p.000012:
p.000012: Manaakitanga is fully realized in the context of relationships. Here mana akiaki (empowerment)
p.000012: empowers partnerships whose quality is enhanced by the level of the parties’ faith and trust in each
p.000012: other (whakapono). Extending beyond cultural safety, māhaki (respectful conduct) acknowledges the
p.000012: importance of recognizing spiritual integrity58, Māori philosophy59, and may include processes like whakawātea
p.000012: (realignment) within the research project.
p.000012:
p.000012: Questions of relevance include:
p.000012: • are kaumātua required to guide the research team?
...
General/Other / declaration of helsinki
Searching for indicator helsinki:
(return to top)
p.000004: Figure 3: Whakapapa
p.000006: 6
p.000006: Figure 4: Tika
p.000008: 8
p.000008: Figure 5: Manaakitanga
p.000011: 11
p.000011: Figure 6: Mana
p.000012: 12
p.000012: List of Tables
p.000012: Table 1: Assessing appropriateness of Māori consultation 17
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Guidelines for Māori research ethics:
p.000012: A framework for researchers and ethics committee members
p.000012:
p.000012:
p.000012: Me whakatika te matatika ki roto i te tikanga kia tika ai
p.000012:
p.000012:
p.000012:
p.000012: Te Ara Tika 1
p.000012:
p.000012: Introduction
p.000012:
p.000012: This document outlines a framework for addressing Māori ethical issues within the context of
p.000012: decision-making by ethics committee members. It draws on a foundation of tikanga Māori (Māori protocols
p.000012: and practices) and will be useful for researchers, ethics committee members and those who engage in
p.000012: consultation or advice about Māori ethical issues from a local, regional, national or international perspective.
p.000012:
p.000012: Context
p.000012:
p.000012: Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key
p.000012: behaviours, processes and methodologies used in research. International codes of ethics such as the
p.000012: Nuremburg Code (1947)2, the Helsinki Declaration (1964)3, the Belmont Report (1979)4 and, more recently, the UNESCO
p.000012: Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards
p.000012: and professional expectations for researchers.
p.000012:
p.000012: These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or
p.000012: experiences for participants and their communities. Despite formal processes and codes of ethics there is
p.000012: ongoing evidence of unethical research practice which highlights the importance of the researcher’s own
p.000012: credibility, trust, honesty and integrity vis-à-vis6 the research project and participants.
p.000012:
p.000012: Over the years Māori have contributed to the critiques of research practice and advocated for the inclusion of
p.000012: tikanga Māori as part of formal ethical decision-making processes (Appendix A). There are a range of
p.000012: models of Māori research ethics which guide researchers and ensure that tikanga and cultural concepts are
p.000012: acknowledged (Appendix B).
p.000012:
p.000012: The Treaty of Waitangi principles of partnership, participation and protection provide a framework for identifying
p.000012: Māori ethical issues in terms of; rights, roles and responsibilities of researchers and Māori communities; the
p.000012: contribution that research makes towards providing useful and relevant outcomes; and addressing inequalities. All
p.000012: research in New Zealand is of interest to Māori, and research which includes Māori is of paramount
p.000012: importance to Māori.
p.000012:
p.000012: In a research context, to ignore the reality of inter-cultural difference is to live with outdated
p.000012: notions of scientific investigation. It is also likely to hamper the conduct of research, and limit the
p.000012: capacity of research to improve human development7.
p.000012:
p.000012:
p.000012: 2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
p.000012: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
p.000012: 3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
p.000012: medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
p.000012: amended by the 59th WMA General Assembly, Seoul, October 2008.
p.000012: 4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
p.000012:
p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
...
Orphaned Trigger Words
p.000012: Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards
p.000012: and professional expectations for researchers.
p.000012:
p.000012: These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or
p.000012: experiences for participants and their communities. Despite formal processes and codes of ethics there is
p.000012: ongoing evidence of unethical research practice which highlights the importance of the researcher’s own
p.000012: credibility, trust, honesty and integrity vis-à-vis6 the research project and participants.
p.000012:
p.000012: Over the years Māori have contributed to the critiques of research practice and advocated for the inclusion of
p.000012: tikanga Māori as part of formal ethical decision-making processes (Appendix A). There are a range of
p.000012: models of Māori research ethics which guide researchers and ensure that tikanga and cultural concepts are
p.000012: acknowledged (Appendix B).
p.000012:
p.000012: The Treaty of Waitangi principles of partnership, participation and protection provide a framework for identifying
p.000012: Māori ethical issues in terms of; rights, roles and responsibilities of researchers and Māori communities; the
p.000012: contribution that research makes towards providing useful and relevant outcomes; and addressing inequalities. All
p.000012: research in New Zealand is of interest to Māori, and research which includes Māori is of paramount
p.000012: importance to Māori.
p.000012:
p.000012: In a research context, to ignore the reality of inter-cultural difference is to live with outdated
p.000012: notions of scientific investigation. It is also likely to hamper the conduct of research, and limit the
p.000012: capacity of research to improve human development7.
p.000012:
p.000012:
p.000012: 2 The Nuremberg Code (1947). The Nuremberg Code is made up of ten ethical principles that govern human experimentation
p.000012: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
p.000012: 3 Helsinki Declaration (1964). World Medical Association Declaration of Helsinki: Ethical principles for
p.000012: medical research involving human subjects. Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and
p.000012: amended by the 59th WMA General Assembly, Seoul, October 2008.
p.000012: 4 Belmont Report (1979). National Commission for the Protection of Human Subjects of Biomedical and
p.000012: Behavioural Research,
p.000012: 5 UNESCO Universal Declaration on Bioethics and Human Rights (2005). United Nations Educational,
p.000012: Scientific and Cultural Organisation (UNESCO) (2005).
p.000012: 6 In relation to
p.000012: 7 National Health and Medical Research Council (2003). Values and Ethics: Guidelines for ethical conduct in Aboriginal
p.000012: and Torres Strait Islander health research. Canberra: 24.
p.000012:
p.000012: 2 Te Ara Tika
p.000012:
p.000012: Tikanga
p.000012:
p.000012: The primary indigenous reference for Māori values and ethics are the creation stories which highlight
p.000012: specific relationships deemed fundamental to the sustainability of life. These relationships are embedded as
p.000012: kawa (primary values) and provide the foundation for the establishment of tikanga.
p.000012:
p.000012: Ethics is about values, and ethical behaviour reflects values held by people at large. For Māori, ethics is about
p.000012: ‘tikanga’- for tikanga reflects our values, our beliefs and the way we view the world8.
p.000012:
p.000012: Tikanga are locally specific practices that aim to enhance these relationships and ensure the preservation of mana
p.000012: (justice and equity, reflected through power and authority). As the environment changes or new situations arise,
p.000012: tikanga are enacted or adapted to provide context-specific responses. Kawa and tikanga provide the primary
p.000012: interface for accessing repositories of cultural knowledge and experience that can be used to inform
p.000012: ethical deliberations. Tikanga also provides a framework through which Māori can actively engage with
p.000012: ethical issues and consider the effect research may have on their values or relationships.
p.000012:
p.000012: Purpose
p.000012:
p.000012: Articulating the ethical dimensions of tikanga as they relate to particular research proposals is
p.000012: a necessary step to support Māori members of ethics committees to fulfil their kaitiaki (guardian/advocate)
p.000012: responsibilities. It should also be of assistance to ethics committees in the course of the ethical
p.000012: deliberations and researchers more generally as a guide to Māori ethical understandings and perspectives. It
p.000012: will improve the capacity of key personnel within the system of ethical review to respond more appropriately to
p.000012: Māori issues and, in doing so, enhance Māori communities’ confidence and trust in the decisions made by both
p.000012: institutional and health and disability ethics committees. In summary, this framework has four main objectives:
p.000012:
p.000012: • to explain key ethical concepts for Māori;
p.000012: • to support decision-making around Māori ethical issues;
p.000012: • to identify ways to address Māori ethical concerns, and
p.000012: • to clarify the kaitiaki roles of Māori ethics committee members.
p.000012:
p.000012: There have been consistent messages about the dual responsibilities of Māori ethics committee members. As
p.000012: defined by the Ministry of Health’s Operational Standard for Ethics Committees (2006)9 the Māori ethics
p.000012: committee member sits alongside other members of the committee to implement the principles of ethical review.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: 8 Te Puni Kokiri (1994). Health sector ethics: Nga tikanga pono wahanga hauora: Mechanisms for Māori into ethical
p.000012: review, Wellington, New Zealand, Ministry of Māori Development.
p.000012: 9 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry
p.000012: of Health.
p.000012:
p.000012: Te Ara Tika 3
p.000012: In addition, whānau/hapū/iwi (family/kinship group/tribe) expect Māori members of ethics committee to act as
p.000012: kaitiaki by understanding Māori ethical concerns, advocating for Māori ethical issues, and protecting Māori interests.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Principles of ethical review
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Kaitiaki (brave, competent
p.000012: and capable)
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Cultural/intellectual property rights, Te Ao Māori (Māori world), the right to participate in society as Māori, whānau
p.000012: ora (family health)
p.000012:
p.000012:
p.000012: Figure 1: The roles and responsibilities of Māori ethics committee members
p.000012:
p.000012: Background to the guidelines and the framework
p.000012:
p.000012: The framework presented in this guideline recognises the broad range of ethical issues identified in
p.000012: previous documents, particularly in the context of health research. The main principles are drawn from tikanga Māori
p.000012: and its philosophical base of mātauranga Māori (traditional knowledge), but also integrate understandings from
p.000012: the Treaty of Waitangi, indigenous values and Western ethical principles.
p.000012:
p.000012: This framework aims to focus the ethical deliberation towards a more constructive critique of research in terms of
p.000012: not only its ability to identify risks but its potential to enhance relationships through the creation of
p.000012: positive outcomes for Māori communities. Concepts of justice and reciprocity are important for identifying
p.000012: tangible outcomes for all parties and supporting more equitable benefit sharing.
p.000012:
p.000012: The framework also advocates for constructive relationships and acknowledges the roles, relationships and
p.000012: responsibilities each party has in the process of engagement.
p.000012:
p.000012: 4 Te Ara Tika
p.000012:
p.000012: The framework considers that both the research design and the cultural and social responsibility of the
p.000012: researchers have an immediate influence on the likely outcomes of the research project and should be considered during
p.000012: ethical deliberations.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Figure 2: Māori ethical framework
p.000012:
p.000012: The Māori ethics framework references four tikanga based principles (whakapapa (relationships), tika
p.000012: (research design), manaakitanga (cultural and social responsibility), and mana (justice and equity) as the
p.000012: primary ethical principles in relation to research ethics. Other ethical concepts and principles are
p.000012: located within this framework and the ethical issues within each segment are identified and cross-referenced to
p.000012: the Ministry of Health’s Operational Standard for Ethics Committees10.
p.000012:
p.000012: Each segment is divided into three parts that identify progressive expectations of ethical behaviour. The outer
p.000012: quadrant relates to what has been termed minimum standards. The minimum standards are expected to have been met by
p.000012: researchers before ethics committee members consider ethical approval for the research project. The middle quadrant
p.000012: refers to good practice which indicates a more Māori responsive approach to the research project. Best practice
p.000012: extends the ethical consideration to align with expectations of behaviour within Te Ao Māori.
p.000012:
p.000012: The axis between the segments provides further opportunity to link the ethical issues to the rights, roles and
p.000012: responsibilities associated with the Treaty of Waitangi, the principles themselves (partnership, participation
p.000012: and protection), a risk/benefit/outcome continuum, and the Māori values of whakapono (faith), tūmanako
p.000012: (aspirations) and aroha (awareness).
p.000012:
p.000012:
p.000012:
p.000012: 10 Ministry of Health (2006). Operational Standard for Ethics Committees. Wellington, New Zealand, Ministry of Health.
p.000012:
p.000012: Te Ara Tika 5
p.000012:
p.000012: The process of ethical review can be thought of in terms of tapu (restricted) and noa (unrestricted).
p.000012: The concept of kia tūpato (to be careful) becomes the starting point for considering the value or potential
p.000012: benefit of a research project. Kia āta-whakaaro (precise analysis) and kia āta-korero (robust discussion)
p.000012: of the practical/ethical/spiritual dimensions of any project is necessary to provide a foundation to kia
p.000012: āta-whiriwhiri (consciously determine) the conditions which allow the project to kia āta-haere (proceed with
p.000012: understanding).
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: TAPU€ kia tūpato € Āta – whakaaro € Āta – korero €
p.000012: Āta - whiriwhiri € Āta – haere € NOA
p.000012:
p.000012:
p.000012:
p.000012: RESTRICTED € careful consideration € precise analysis € robust discussion € determine these conditions € proceed with
p.000012: understanding € UNRESTRICTED
p.000012:
p.000012: 6 Te Ara Tika
p.000012:
p.000012: Whakapapa – He aha te whakapapa o tēnei kaupapa?11
p.000012:
p.000012: Whakapapa is used to explain both the genesis and purpose of any particular kaupapa (topic/purpose).
p.000012: Whakapapa is an analytical tool for not only understanding why relationships have been formed but
p.000012: also monitoring how the relationships progress and develop over time (mai i te whai ao ki te ao mārama).
p.000012: Within the context of decision- making about ethics, whakapapa refers to quality of relationships and the
p.000012: structures or processes that have been established to support these relationships. In research, the
p.000012: development and maintenance of meaningful relationships between researcher and research participant
...
Appendix
Indicator List
Indicator | Vulnerability |
access | Access to Social Goods |
authority | Relationship to Authority |
autonomy | Impaired Autonomy |
belmont | belmont |
culturally | cultural difference |
disability | Mentally Disabled |
educational | education |
ethnic | Ethnicity |
ethnicity | Ethnicity |
faith | Religion |
family | Motherhood/Family |
helsinki | declaration of helsinki |
indigenous | Indigenous |
influence | Drug Usage |
party | political affiliation |
property | Property Ownership |
restricted | Incarcerated |
single | Marital Status |
vulnerable | vulnerable |
Indicator Peers (Indicators in Same Vulnerability)
Indicator | Peers |
ethnic | ['ethnicity'] |
ethnicity | ['ethnic'] |
Trigger Words
capacity
consent
cultural
ethics
harm
justice
protect
protection
risk
sensitive
Applicable Type / Vulnerability / Indicator Overlay for this Input