Genomics and inclusion of Indigenous peoples in high income countries.

Genomics research related to Indigenous people has been at worst exploitative and at best, retrospectively on a journey to improve effective engagement of Indigenous individuals and communities. Genomics can positively impact all stages of clinical management, and to improve genomic effectiveness researchers aggregate genomic data from diverse global sub-populations, such as shared ancestry groupings, as people within these groupings will have a greater proportion of shared DNA traits. While genomics is already being used worldwide to improve lives, its utility and effectiveness has not been maximized for individuals with Indigenous ancestry. Several large datasets of human genetic variation have been made publicly available, of which the most widely used is the Genome Aggregation Database (gnomAD), but none of these databases currently contain any population-specific data for Indigenous populations. There are many reasons why Indigenous people have been largely left out of genomics research and, because of this, miss out on the benefits offered. It is also clear that if research is to be effective, it needs to be done 'with' and not 'on' Indigenous communities. This systematic review of the literature regarding Indigenous peoples (in high income countries) and genomics aims to review the existing literature and identify areas of strength and weakness in study design and conduct, focusing on the effectiveness of Indigenous community engagement.

"No One Manages It; We Just Sign Them Up and Do It": A Whole System Analysis of Access to Healthcare in One Remote Australian Community.

OBJECTIVE: To assess the accessibility, availability and utilisation of a comprehensive range of community-based healthcare services for Aboriginal people and describe contributing factors to providing effective healthcare services from the provider perspective. SETTING: A remote community in New South Wales, Australia. PARTICIPANTS: Aboriginal and non-Aboriginal health and education professionals performing various roles in healthcare provision in the community. DESIGN: Case study. METHODOLOGY: The study was co-designed with the community. A mixed-methods methodology was utilised. Data were gathered through structured interviews. Descriptive statistics were used to analyse the availability of 40 health services in the community, whilst quotations from the qualitative research were used to provide context for the quantitative findings. RESULTS: Service availability was mapped for 40 primary, specialised, and allied health services. Three key themes emerged from the analysis: (1) there are instances of both underservicing and overservicing which give insight into systemic barriers to interagency cooperation; (2) nurses, community health workers, Aboriginal health workers, teachers, and administration staff have an invaluable role in healthcare and improving patient access to health services and could be better supported through further funding and opportunities for specialised training; and (3) visiting and telehealth services are critical components of the system that must be linked to existing community-led primary care services. CONCLUSION: The study identified factors influencing service availability, accessibility and interagency cooperation in remote healthcare services and systems that can be used to guide future service and system planning and resourcing.