Oral Presentation GENEMAPPERS 2024

Towards achieving culturally informed participant safety in a genomic study of coronary artery disease (#7)

Pritika Narayan 1 , Litia Racumu 2 , Lavenia Merekula 3 , Jyoti Mani 2 , Roshika Deo 4 , Ireen Rahiman-Manuel 5 , Losalini Tuwere 6 , Agnes McKay Vucago 7 , Sandhaya Bhawan 8 , Grace Samy 9 , Ravi Reddy 10 , Krish Naidu 9 , Shereen Naicker 11 , Pranesh Jogia 12 , Rahul Gandhi 7 , Allamanda Faatoese 11 , Peter Larsen 1
  1. University of Otago, Wellington, New Zealand
  2. CureKids Fiji, Suva
  3. Ministry of Health and Medical Services , Lautoka, Fiji
  4. Girmit Kissa, Suva
  5. Impactdev360 , Auckland
  6. Fijian Language Class, Wellington, New Zealand
  7. Capital and Coast DHB, Wellington, New Zealand
  8. RegPharmNZ, Wellington
  9. Fiji Girmit Foundation NZ, Auckland
  10. Massey University, Auckland
  11. University of Otago, Christchurch
  12. Waikato DHB, Hamilton

We wish to examine genetic drivers of premature coronary artery disease in Peoples of Fiji. However, before we can undertake this work, we believe we need to develop a framework for approaching genetic research that the community will have trust and confidence in. Over the last 2 years we have conducted 18 consultations with Peoples of Fiji community groups both in New Zealand and in Fiji. These consultations have centred around the following questions:

  1. Does the proposed study align with the questions that are important to the community?
  2. What are the key values we need to place front and centre in all decision making relating to the proposed study, to make sure we respect the community, protect participants and their data, and have translatable benefit for improving heart health equity?
  3. How can these key values guide the research data management plan and any decisions made about the data by our community governance team in partnership with researchers and clinicians?

We have developed a cultural framework that incorporates the key values identified during the consultations and is representative of the diversity and intersections that make up Peoples of Fiji. Each value was likened to five key parts of the coconut tree, an image that deeply resonated with the community from Fiji.

  • Wakana/Jardh (roots): strong foundation of relationship and trust
  • Vara/Biya (seed): building awareness, capability and opportunity for future generations to thrive
  • Tolona/Dhardh (trunk): protection and governance to keep the community safe
  • Vuana/Fal (fruit): ensure benefit to community health and wellbeing and provide sustenance for ongoing work
  • Drauna/Patti (leaves): representing the diversity that is united by a common goal.

We will present on how this cultural framework and these key values are informing the relationships and research partnerships as well as the research design, execution and implementation so far.