Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people

Abstract

Globally, there is a recognised need that all populations should be able to access the benefits of genomics and precision medicine. However, achieving this remains constrained by a paucity of data that quantifies access to clinical genomics, particularly amongst Indigenous populations. Using administrative data from clinical genetic health services across three Australian jurisdictions (states/territories), we investigate disparities in the scheduling and attendance of appointments among Aboriginal and/or Torres Strait Islander people, compared to non-Indigenous people. For 14,870 appointments scheduled between 2014–2018, adjusted Multivariate Poisson Regression models revealed that Aboriginal and/or Torres Strait Islander people were scheduled fewer appointments (IRR 0.73 [0.68–0.80], <0.001) and attended at lower rates (IRR 0.85 [0.78–0.93], <0.001). Within this population, adults, females, remote residents, and those presenting in relation to cancer or prenatal indications experienced the greatest disparity in access. These results provide important baseline data related to disparities in access to clinical genomics in Australia.

Evaluation and pilot testing of a multidisciplinary model of care to mainstream genomic testing for paediatric inborn errors of immunity

“…Our MoC was not inclusive of diverse populations. In Australia, access disparities to health services are well reported for Aboriginal and Torres Strait Islander people and those from culturally and linguistically diverse populations [41,42]. Were you given enough opportunity to ask questions about the genomic test for you child?…”

“…Our MoC was not inclusive of diverse populations. In Australia, access disparities to health services are well reported for Aboriginal and Torres Strait Islander people and those from culturally and linguistically diverse populations [ 41 , 42 ]. Disparities in service access are complex, and largely driven by macro-and micro-level issues, such as lack of infrastructural support, standardized practice, and individual challenges (e.g., lack of trust, fear, rapport, and difficulties in navigating health systems) [ 41 , 42 ].…”

“…In Australia, access disparities to health services are well reported for Aboriginal and Torres Strait Islander people and those from culturally and linguistically diverse populations [ 41 , 42 ]. Disparities in service access are complex, and largely driven by macro-and micro-level issues, such as lack of infrastructural support, standardized practice, and individual challenges (e.g., lack of trust, fear, rapport, and difficulties in navigating health systems) [ 41 , 42 ]. While it was beyond this project to address these issues, future work should aim to address access disparities including developing separate pathways for diverse populations, further implementation of care co-ordinators, and improved education for referrers to identify patients eligible for testing.…”

Precision medicine in Australia: indigenous health professionals are needed to improve equity for Aboriginal and Torres Strait Islanders

“…Focusing on both the health system and health service level, the project found that there was a willingness among Indigenous Australians to utilize clinical genomic services and that there is a higher incidence of genetic conditions amongst the population [ 15 ]. However, when genetic services are available, Indigenous Australians have lower rates of appointment scheduling and attendance [ 16 ]. In an indicative example, Aboriginal people of reproductive age (18–45 years) were 9.32 times less likely to be referred for a prenatal appointment within the Genetics Service of Western Australia than non-Indigenous people [ 15 ].…”

Uptake of funded genomic testing for syndromic and non-syndromic intellectual disability in Australia

“…For instance, most clinical genetics services are situated in metropolitan centres, so patients and non-genetic clinicians in rural and regional areas may have less access to genomic testing or specialist support [ 9 ]. Access issues are particularly prominent for Indigenous populations [ 10 ]. Not all jurisdictions in Australia have local access to genomic testing laboratories.…”