By Phillip Wilcox, University of Otago, Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungunu ki te Wairoa
There is no one size fits all when it comes to designing research that fulfils cultural obligations, but two research exemplars from opposite ends of the world that incorporate Indigenous perspectives are providing potential direction.
It’s hoped exemplars such as these will be able to guide the design of databases and more culturally safe and relevant study designs that address the lack of genetic data on Indigenous populations currently hindering genetic diagnosis in health. Improving access to the benefits from precision medicine, including tailored treatment for genetic disorders, will help to correct existing inequities that are often referred to the ‘genomic divide’.
This lack of population-specific information is a global issue, attributed to a poor understanding and acknowledgement from many researchers of valid concerns around sampling of Indigenous Peoples’ DNA and storing and sharing their genetic data, and inadequate engagement between research and Indigenous groups.
The need to navigate and collaborate with Indigenous Peoples in different communities calls for fundamental recognition of the diversity in the communities. This includes, among others, their history, culture and traditions; different cultural contexts may require specific implementation strategies.
Researchers involved in the “Silent Genomes” project in Canada and the “Aotearoa Variome” project in New Zealand are two groups who are working to successfully navigating this genomic divide.
Despite being developed independently, there are remarkable similarities in the rationales, purpose, design, and emerging directions for implementing results from these two research projects a world apart.
What this means
There are ongoing challenges to implementing genomic research in and with Indigenous communities; there is no single universal approach to meaningful participation. Individuals and community enthusiasm to participate in genomic research will vary, as will views on how their data should be managed.
However, there are key requirements for such projects to succeed:
- Developing a catalogue of genetic variants observed in Indigenous peoples and creating links with culturally appropriate diagnostic services to help correct health inequities specific to Indigenous populations;
- Improving genomic health literacy and building capacity with Indigenous peoples working in genome science to address future needs and applications for health;
- Developing and implementing new culturally safe guidelines, procedures, and policies for engaging communities and bridging the genomic divide;
- Protecting the rights and interests and respecting the views of Indigenous participants pertaining to their DNA samples and data generated.
What the New Zealand and Canadian research projects had in common
A paper published by Nadine R. Caron, Meck Chongo, Maui Hudson, Laura Arbour, Wyeth W Wasserman, Stephen Robertson, Solenne Correard, Phillip Wilcox “Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts“ outlines both the need and potential solutions for incorporating Indigenous perspectives into databases. https://pubmed.ncbi.nlm.nih.gov/32391301/
The paper highlighted common denominators from both projects.
The key is that they are Indigenous led or co-led.
Both also acknowledge the rights, interests and views of their Indigenous participants to their DNA samples and the data generated.
And importantly, both initiatives have been informed by previously-developed peer-reviewed Indigenous ethical frameworks. These have enabled researchers to position genomic data and science within more culturally appropriate overarching research and oversight frameworks, maximising benefits and minimising risks for participating communities.