Student: Kasey Tawhara
Supervisor: Suzanne Pitama
Sponsor: Cardioendocrine Theme Bursaries
What was the research question?
Genetic research is advancing rapidly and becoming an important part of modern medicine. However while it advances at such a pace, the gap between its progress and public understanding is getting wider. This is particularly true for Maori, who have to adapt to this new era while retaining their heritage and tikanga (traditions).
Only a few studies have explored Maori attitudes towards genetic research. Therefore this study aims at adding to this small body of knowledge by investigating and recording the perspectives and attitudes of Maori who live in Canterbury towards genetic research.
How was it done?
Using community contacts, we interviewed five groups of Maori who live in/around Christchurch. Each group was encouraged to discuss their perceptions of the role of genetic research, their hopes and concerns, and ways in which Maori may feel more comfortable in participating in genetic research.
What did we find?
Many participants saw the benefits of genetic research in that it could address health inequalities within Aotearoa, it could also help identify genetic trends in whanau/families and therefore find solutions to genetic conditions. However, despite seeing the benefits of genetic research, a majority were suspicious of research agendas and ethics, which may be from previous research experiences. Many also identified the direct conflict that genetic research has with Maori tikanga (customs) and spirituality. Another issue for participants was the lack of information provided to Maori and the general public around genetic research, what genetic research entails and how it may affect not only participants but Maori and the general public.
Participants highlighted that for Maori to feel more comfortable about genetic research there is a need for Maori to be involved at all levels in the research process. They felt this could be achieved by encouraging students to enter research, by having a kaitiaki group oversee research projects and having researchers consult with Maori to gain a perspective of Maori world views. They also emphasised the importance of having a relationship with researchers that is built on trust, integrity and mutual respect. They established that those relationships were key criteria to encourage participation of Maori in genetic research.
What does this mean?
The challenge now to us as health professionals and researchers is to establish clear research processes that encompass Kaupapa Maori principles, have articulated levels of community accountability and include Maori oversight and participation at all levels. This would increase participation but also ensure Maori health gain was clearly the objective of all research.