PSYCH 306: Hineatua Parkinson’s wk11 + Ethics

What are the key historical documents laying the foundation for research ethics?

• The Nuremburg Code (1947)

• The Universal Declaration of Human Rights (1948)

• The Declaration of Helsinki (1964)

• The Belmont Report (1979)

• United Nations Declaration on the Rights of Indigenous Peoples (2007)

The Nuremburg Code (1947) CONTRIBUTIONS

• First modern international code for human research

• Response to inhumane Nazi experiments on camp prisoners

• Not legally binding, but internationally recognized as foundational in research ethics.

Key Ethical Principles of the Nuremberg Code (10 total):

1. Voluntary informed consent is essential.

2. Research must have social value—cannot be random/unnecessary.

3. Must be based on prior animal studies or existing knowledge.

4. Avoid unnecessary suffering or harm.

5. No experiments with expectation of death/disability, unless researchers are also participants.

6. Risk must not exceed the value of the problem addressed.

7. Provide adequate protection against harm.

8. Only qualified professionals should conduct the research.

9. Participants can withdraw at any time.

10. Researchers must stop the experiment if harm is likely.

The Universal Declaration of Human Rights (1948) CONTRIBUTIONS

• Establishes fundamental and universal human rights for all people

• Promotes respect, education, and recognition of rights globally

• Informs ethical research through emphasis on human dignity, freedom, and equality

Declaration of Helsinki (1964) contributions

expanded on ethics codes, drafted by the World Medical Association as a “living document”

• Formation of ethics review boards (IRBs)

• differentiation between therapeutic and non-therapeutic research

• Identification and protection of vulnerable populations

• Ongoing informed consent and removal of sexist language

Belmont Report (1979) CONTRIBUTIONS

published in response to past unethical US studies (e.g. Tuskegee Syphilis Study); foundational for US research ethics

3 principles

• Respect for persons: autonomy and protection for those with diminished capacity

• Beneficence: maximise benefit, minimise harm

• Justice: fair distribution of research burdens and benefits

What was the Tuskegee Syphilis Study, and why is it ethically significant?

US Study (1932-1972) involving Black men with syphilis who were not given informed consent and denied treatment even after a cure was found

Violated all Belmont principles

• no respect for autonomy

• no beneficence - participants were harmed

• injustice

United Nations Declaration on the Rights of Indigenous Peoples (2007)

• Affirms the rights of Indigenous peoples to self-determination, culture, identity, languagem employment, health, education, etc.

• Crucial for ethical research involving Indigenous communities: centers Indigenous sovereignty, consent, & benefit

What does “relational ethics” refer to

makes fuzzy the articificial separation of methodology & methods

• guides our methodology & methods and weaves both together

What concepts and frameworks does “relational ethics” draw from?

Transformative Praxis (e.g., Pihama & Southey, 2015)

• Relational ethics is tied to transformative aims—research should benefit the communities involved.

• Applies to personal, service, and structural levels.

• Encourages working through openness, vulnerability, and shared learning.

Centralises phronetic knowledge (practical, lived experiences)

Te Ara Tika

a framework developed to guide ethical research with Māori, for Māori, and by Māori.

• supports researchers in upholding Tikanga Māori (Māori values and practices)

• promoting mana-enhancing, respectful engagement.

What are the Te Ara Tika guidelines for Maori research ethics, and what are their core principles

We Trust Maori Mana

• Whakapapa (Relationships)

• Tika (Research Design)

• Manaakitanga (Respect & Care)

• Mana (Justice & equity)

Main objectives of Te Ara Tika Framework

• to explain key ethical concepts for Maori

• to support decision-making around Maori ethical issues

• to identify ways to address Maori ethical concerns

• To clarify the kaitiaki roles of Maori ethics committee members

Te Ara Tika: Whakapapa core principles

used explain the genesis + purpose of any particular kaupapa (topic/purpose)

• the development & maintenance of meaningful relationships between researcher and participant

Te Ara Tika: Tika core principles

• Reserch design is mainstream, maori-centred

• kaupapa maori

Te Ara Tika: Mana core principles

Justice & equity

• Protects the authority and dignity of Maori individuals and communities

• Research muct be beneficial, empowering, and not exploitative

Te Ara Tika: Manaakitanga core principles

Respect and care

• Emphasises kindness, generosity, and care for participants

• Involves reciprocity, humilitym and ensuring participant wellbeing

What are the different levels of engagement with Maori that research may fall under in NZ

• Research with no specific Maori component

• Research specifically relevant to Maori

• Research involving Maori

• Maori centred research

• Kaupapa Maori research

1) Research with no specific Maori component

• No Matauranga Maori involved

• Maori not involved in the research process

• May be of some interest to Maori, but not more than to other stakeholders

2) Research specifically relevant to Maori

• Research is relevant to Maori as stakeholers or end-users

• Maori is not usually involved

• Matauranga Maori may guide relevance in minor ways

• Can contribute to Maori aspirations

3) Research involving Maori

• Matauranga Maori (20-50%) included

• Maori involved in the design and/or conduct of the research

• Direct relevance to Maori

• Contributes to Maori aspirations and outcomes

4) Maori-centred research

• Maori-led or closely guided by Maori

• ~50%+ Matauranga Maori used

• Kaupapa Maori research is core focus

• Maori are primary end-users, and work is often collaboratve or consultive

• Significant contribution to Maori aspirations

5) Kaupapa Maori Research

• 80%+ Matauranga Maori is central to the project

• Fully grounded in te ao Maori, with fluent understanding of Maori culture

• Often led by Maori researchers, using Kaupapa Maori methodologies

• Strong contribution to Maori aspirations and self-determination (tino rangatiratanga)

What is Māori Data Sovereignty?

The inherent rights and interests Maori have over the collection, ownership, and use of Maori data

• Grounded in relationships with land, water, and the natural world

Māori Data Sovereignty

• Data as living tāonga (treasure): Data holds strategic value for Māori.

• Māori data includes:

  • Data produced by Māori or about Māori

  • Data from Māori organisations/businesses

  • Data used to describe/compare Māori collectives

  • Data about Te Ao Māori from research

What is Vision Mātauranga

A NZ government science policy framework that:

• Integrates Western science and Matauranga Maori to create new research possibilities

• Encourages purposeful, mutually beneficial relatiionships between researchers and Maori

Vision Mātauranga 4 pillars

My Husband In Turin

• Matauranga

• Hauora & oranga

• Indigenous Innovation

• Taiao

Vision Matauranga: Matauranga

Exploring indigenous knowledge & research, science & technology, and developing a distinctive body of knowledge at the interface between indigenous and western knowledge

Vision Matauranga: Hauora & oranga

Providing better health and social wellbeing for Maori

Vision Matauranga: Taiao

Achieving sustainability through understanding iwi and hapu

• relationships with the enviro

Vision Matauranga: Indigenous Innovation

The development of producs, processes, systems, and services from Maori knowledge, resources, and people

What is Kaupapa Māori Research?

A non-deficit, Maori-centred approach that:

• Uses Maori tikanga (practices/protocols) to inform research, policy, education, and health

• Addresses deep structural inequalities

• Challenged dominant power structures, control, ownership, and constructions of “truth”

• Rooted in Tino Rangatiratanga (self-determination)

KMR principle: Tino Rangatiranga

The Principle of Self-Determination

• allows Maori to control their own culture, aspirations, and destiny

KMR: Taonga Tuku Iho

The Principle of Cultural Aspiration

• Emphasises the validity of Maori ways of knowing, doing, and understanding the world

• Taonga = prized, special

KMR: Ako Maori

The Principle of Culturally Preferred Pedagogy

• Teaching and learning practices that are preferred by Maori

KMR: Te Titiri Waitangi

The Principle of the Treaty of Waitangi

• Critically analyse relationships, challenge the status quo, and affirm Maori rights through te Titiri

KMR: Ka piki nga raurau o te kaina

The Principle of Socio-Economic Mediation

• KMR provides positive benefit to Māori communities overcoming hardship

KMR: Whanau

The Principle of Extended Family Structure

• Relationships are central and the researcher has ongoing relationship with research stakeholders

KMR: Kaupapa

The Principle of Collective Philosophy

• The research contributes to the community’s aspirations and purpose

KMR: Ata

The Principle of Growing Respectful Relationships

• Building and nurturing relationships and wellbeing when engaging with Maori