RESUMO
Australian Genomics is a national collaborative partnership of more than 100 organizations piloting a whole-of-system approach to integrating genomics into healthcare, based on federation principles. In the first five years of operation, Australian Genomics has evaluated the outcomes of genomic testing in more than 5,200 individuals across 19 rare disease and cancer flagship studies. Comprehensive analyses of the health economic, policy, ethical, legal, implementation and workforce implications of incorporating genomics in the Australian context have informed evidence-based change in policy and practice, resulting in national government funding and equity of access for a range of genomic tests. Simultaneously, Australian Genomics has built national skills, infrastructure, policy, and data resources to enable effective data sharing to drive discovery research and support improvements in clinical genomic delivery.
Assuntos
Genômica , Política de Saúde , Humanos , Austrália , Doenças Raras , Atenção à SaúdeRESUMO
Clinical genomic testing, analysis of your entire genetic material for healthcare purposes, is a complex topic for various medical specialities. Although Australia is a multicultural society, most genomic resources are produced in English which can make understanding challenging for people from culturally and linguistically diverse (CALD) backgrounds. A mixed methods approach explored the views of healthcare interpreters and people from CALD backgrounds to identify knowledge gaps and inform the provision of more equitable services. Eighteen healthcare interpreters completed a survey from two public hospitals in Melbourne. Descriptive data analysis informed the four pilot interviews with individuals from CALD backgrounds identified through online advertisements. Interpreters revealed variable satisfaction with patient understanding of genomic concepts and suggested that basic training and resources on genomics would help facilitate interpretation. Three themes arose from the pilot interviews: (1) cultural factors; (2) perceptions of genomics; and (3) language barriers and complex terminology. Resources that consider cultural differences and language barriers will help to ensure people from CALD backgrounds are adequately informed about genomic testing. The pilot interviews will inform future in-depth studies of the views of people from the CALD community.