Journal article

Australians' perspectives on support around use of personal genomic testing: Findings from the Genioz study

Sylvia A Metcalfe, Chriselle Hickerton, Jacqueline Savard, Elaine Stackpoole, Rigan Tytherleigh, Erin Tutty, Bronwyn Terrill, Erin Turbitt, Kathleen Gray, Anna Middleton, Brenda Wilson, Ainsley J Newson, Clara Gaff

EUROPEAN JOURNAL OF MEDICAL GENETICS | ELSEVIER | Published : 2019

Abstract

Personal genomic testing using direct-to-consumer and consumer-directed models, with or without involvement of healthcare providers, is increasing internationally, including in Australia. This study forms a sub-set of the Genioz study - Genomics: National Insights of Australians. We aimed to explore Australians' experiences with these types of tests, especially online DNA tests, and their views regarding whom they would seek support from around understanding test results. The study used a mixed methods approach, employing an exploratory quantitative online survey and follow-up qualitative semi-structured interviews. Between May 2016 and May 2017, 2841 Australians responded to the survey. Int..

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Grants

Awarded by Australian Research Council


Awarded by Wellcome Grant


Funding Acknowledgements

We would like to acknowledge the contributions of: Luke Stevens, Susan Donath, Susanna Vidmar, Mark Adams, Taryn Charles, Larissa Ng, Elicia Pettirosso, Ollie Spray and Nicole Gardner to the work described in this manuscript. We'd also like to acknowledge the Genioz Advisory Group for assistance with promoting the survey. Funding was provided through an Australian Research Council Discovery Project grant (DP150100597) and was also supported financially by the Victorian Government Operational Infrastructure support program, Garvan Institute of Medical Research and the University of Sydney Network on Bodies, Organs and Tissues. This work was also supported by Wellcome Grant 206194 paid to Society and Ethics Research, Connecting Science. Ainsley Newson is supported by a Sydney Medical School Research Accelerator Grant (2017-2018).