Reports and publications (published elsewhere)

Indigenous genetics and rare diseases: harmony, diversity and equity

Posted on: 8 January, 2018
Issue: Vol 18 No 1, January 2018 – March 2018
Related to Cultural ways Health Research

Baynam G, Molster C, Bauskis A, Kowal E, Savarirayan R, Kelaher M, Easteal S, Massey L, Garvey G, Goldblatt J, Pachter N, Weeramanthri TS, Dawkins HJS (2017)
Indigenous genetics and rare diseases: harmony, diversity and equity
In: Posada de la Paz M, Taruscio D, Groft SC, eds. Rare diseases epidemiology: update and overview. : Springer International Publishing: 511-520

This book chapter takes an Australian perspective to illustrate some key areas that are vital to the equitable translation of new knowledge for the improved diagnosis of genetic and rare diseases for Indigenous people. Specifically, inequalities in access to clinical genetics services and the lack of reference data to inform diagnoses. It provides examples of ways in which these inequities are being addressed through Australian partnerships which support a harmonious and inclusive approach. It discusses how this approach ensures that benefits from traditional wisdom, community knowledge and shared experiences are interwoven to support and inform the implementation of new knowledge.

Abstract adapted from authors

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