Abstract
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.
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Data availability
The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.
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Acknowledgements
This study was completed in partial fulfilment of the requirements for the Master of Genomics and Health, the University of Melbourne, Victoria, Australia. This work was supported by the Victorian Government’s Operational Infrastructure Support (OIS) Programme.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). The study was approved by the Royal Children’s Hospital Melbourne Human Research Ethics Committee (HREC 38264).
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Uebergang, E., Best, S., de Silva, M.G. et al. Understanding genomic health information: how to meet the needs of the culturally and linguistically diverse community—a mixed methods study. J Community Genet 12, 549–557 (2021). https://doi.org/10.1007/s12687-021-00537-0
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DOI: https://doi.org/10.1007/s12687-021-00537-0