Cultural questions – guidance

This guidance relates to the cultural questions in the Health and Disability Ethics Committees (HDEC) application form. It has been developed in consultation with HDEC Chairs, HDEC members and external Māori research groups.

Question p.4.1.

Please describe whether and how your study may benefit Māori.

• The answer should include incidence and prevalence (statistics) of the disorder in Māori (or treatment indication if a drug trial).

• Some disorders are particularly important for Māori health, while others are relatively rare in Māori and may have less impact. Please state clearly if the impact of treatment or prevalence of disease in Māori is lower than or the same as in other populations.

• Generally, any available statistics relating to Māori should be provided where possible.

• If the study is an early-phase trial, include a caveat that no benefit is expected as a direct result of the study.

• If relevant, please include information on how researchers will ensure that Māori benefit at least equally (and how they can disproportionately benefit if they are disproportionately represented). For example, what extra measures, if any, are in place to ensure Māori participation (iwi consultation, Māori researchers, active follow-up, etc) as well as interpretation of results and presentation of findings back to those consulted.

• Note: This could be explained in the question about consultation (question p.4.3.1).

Question p.4.2.

Please identify the main cultural issues that may arise for Māori who may participate in your study, and explain how these issues will be managed.

• While cultural issues should be raised during consultation, which can occur after HDEC review, the application is not considered correctly completed if at least some major cultural concerns are identified.
   
• The answer should address potential issues relating to tapu. Please provide mitigation strategies to ensure that tikanga Māori will be respected and Māori participants will be treated in a culturally appropriate way.
   
• Knowledge is taonga and should be acknowledged as such given that all research is a collection of knowledge.

Studies involving human tissue collection

• Māori consider the body to be tapu. Any health or medical research that involves the body, or any part of the body, such as organs, blood, hair, saliva and/ or other tissue, must be conducted in a respectful manner. The collection of human tissue from a deceased person is particularly sensitive.
   
• The answer should discuss potential issues relating to human tissue, in particular, collective ownership of tissue or consideration of whakapapa, etc. This includes obtaining consent from iwi where appropriate (for example, for use of a deceased person’s tissue). Also consider returning specimens where possible and or appropriate.
   
• For further guidance, refer to Te Ara Tika – Guidelines for Māori research ethics: A framework for researchers and ethics committee members (PDF, 3.5 MB)(external link)

Studies involving genetic research

• Genetic research is an area of prime sensitivity for Māori because of the association with whakapapa. Communities are also concerned about new technologies and research in areas such as genetic engineering, the creation of transgenic life forms and human genome research investigating human variation and diversity in indigenous populations.
   
• For more information on genetic research, read pages 15–16 of  Te Ara Tika – Guidelines for Māori research ethics: A framework for researchers and ethics committee members (PDF, 3.5 MB)(external link)

Studies involving interviews or sensitive subject matter

The answer should discuss potential issues relating to whakamā (shame). Please include mitigation strategies to manage whakamā.

 Question p.4.3.1.

Please either describe your study’s consultation process, or explain why you do not consider that formal consultation with Māori is required.

• As a general rule, consultation should take place if Māori are to be involved as participants in a project or the project relates to a health issue of importance to Māori.
   
• Evidence of consultation does not need to be submitted before HDEC reviews an application. However, HDEC does need to know the planned consultation process for the main study sites.
   
• Please explain the consultation process, that is, who, what, where, when and how.
   
• Include names or institutions of those you will consult with.
   
• For further information, refer to:
  • Guidelines for Researchers on Health Research Involving Māori (PDF, 3.5 MB)(external link)
  • Te Ara Tika – Guidelines for Māori research ethics: A framework for researchers and ethics committee members (PDF, 3.5 MB)(external link)

Question f.1.1.

Might your intervention study contribute to reducing inequalities in health outcomes between different populations, and particularly between Māori, Pacific peoples and other New Zealanders?

• The answer should:
  • outline what could happen if the study results in improved outcomes for Māori
  • explain how/ what extra measures are in place to ensure equal (or at least population commensurate) Māori participation in order to inform study findings and results
  • clarify how the results will be interpreted and shared – and how they may be used to reduce inequalities.
• The application should also provide available statistics for Pacific peoples, Asian people and other ethnic populations in New Zealand.

For more information

For more information, contact the HDEC Secretariat:

• email hdecs@health.govt.nz