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.
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).
The answer should discuss potential issues relating to whakamā (shame). Please include mitigation strategies to manage whakamā.
For more information, contact the HDEC Secretariat: