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Genome Sequencing Report and Patient Charter

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Australian patients' and families’ perspectives on genome sequencing

Genetic Alliance Australia's "Australian Patients' and Families' Perspectives on Genome Sequencing" project commenced September 2015 out of an expressed need by our members to clarify perceptions of genome sequencing and to better understand the impact on families. Questions about financial cost, overall benefit, incidental findings, privacy and others aspects were addressed in the project. Following a detailed national survey (411 respondents) and a focus group, Genetic Alliance Australia (GA) is providing guidance on what should be deliberated when patients, carers, the general public and policy makers are considering genome sequencing.

This report lists twenty-one recommendations over six identified themes to be considered when incorporating genomics clinics and testing services into the healthcare system. Genetic Alliance Australia insists consideration of the recommendations from this report when developing a genome healthcare strategy.

Patients are on the edge of a dynamic shift in medical diagnostic treatment. This comprehensive report and Patient Charter is the first of its kind in Australia. The report serves not only as an important patient voice for rare genetic conditions, but it is a starting point to build on to ensure Australians make well informed shared healthcare decisions. The Patient Charter outlines important points to be considered by patients and families when having their genome sequenced.

To view the REPORT CLICK HERE

The project has been cleared by the South Eastern Sydney Local Health District Human Research Ethics Committee in accordance with the National Health and Medical Research Council's guidelines.


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