Australians’ views and experience of personal genomic testing: survey findings from the Genioz study

Savard, J; Hickerton, C; Tytherleigh, R; Terrill, B; Turbitt, E; Newson, AJ; Wilson, B; Gray, K; Gaff, C; Middleton, A; Stackpoole, E; Metcalfe, SA

Australians’ views and experience of personal genomic testing: survey findings from the Genioz study

Savard, J Hickerton, C Tytherleigh, R Terrill, B Turbitt, E

Newson, AJ Wilson, B Gray, K Gaff, C Middleton, A Stackpoole, E Metcalfe, SA

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Publication Type:: Journal Article
Citation:: European Journal of Human Genetics, 2019, 27 (5), pp. 711 - 720
Issue Date:: 2019-05-01

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Field	Value	Language
dc.contributor.author	Savard, J	en_US
dc.contributor.author	Hickerton, C	en_US
dc.contributor.author	Tytherleigh, R	en_US
dc.contributor.author	Terrill, B	en_US
dc.contributor.author	Turbitt, E https://orcid.org/0000-0002-6650-9702	en_US
dc.contributor.author	Newson, AJ	en_US
dc.contributor.author	Wilson, B	en_US
dc.contributor.author	Gray, K	en_US
dc.contributor.author	Gaff, C	en_US
dc.contributor.author	Middleton, A	en_US
dc.contributor.author	Stackpoole, E	en_US
dc.contributor.author	Metcalfe, SA	en_US
dc.date.available	2018-11-22	en_US
dc.date.issued	2019-05-01	en_US
dc.identifier.citation	European Journal of Human Genetics, 2019, 27 (5), pp. 711 - 720	en_US
dc.identifier.issn	1018-4813	en_US
dc.identifier.uri	http://hdl.handle.net/10453/134918
dc.description.abstract	© 2019, The Author(s). Personal genomic tests (PGTs) for multiple purposes are marketed to ostensibly healthy people in Australia. These tests are generally marketed and purchased online commercially or can be ordered through a health professional. There has been minimal engagement with Australians about their interest in and experience with ordering a PGT. As part of a multistage, interdisciplinary project, an online survey (Stage 2 of the Genioz study) was available from May 2016 to May 2017. In total, 3253 respondents attempted the survey, with 2395 completed Australian responses from people with and without experience of having a PGT: 72% were female; 59% of the whole sample were undertaking/or had a university education; and, overall, age ranged from 18—over 80. A total of 571 respondents reported having had a genetic test, 373 of these classifiable as a PGT. A bivariate analysis suggests people who have undergone PGT in our sample were: women aged 25 and over; or in a high socioeconomic group, or have a personal or family diagnosis of a genetic condition (P ≤ 0.03). After a multivariate analysis, socioeconomic status and a genetic condition in the family were not of significance. The most common types of PGT reported were for carrier status and ancestry. Findings suggest greater awareness of, and an increasing demand for non-health related PGT in Australia. To support both consumers and health care professionals with understanding PGT results, there is a need for appropriate support and resources.	en_US
dc.relation.ispartof	European Journal of Human Genetics	en_US
dc.relation.isbasedon	10.1038/s41431-018-0325-x	en_US
dc.subject.classification	Genetics & Heredity	en_US
dc.title	Australians’ views and experience of personal genomic testing: survey findings from the Genioz study	en_US
dc.type	Journal Article
utslib.citation.volume	5	en_US
utslib.citation.volume	27	en_US
utslib.for	0604 Genetics	en_US
utslib.for	1103 Clinical Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Graduate School of Health
utslib.copyright.status	closed_access
pubs.issue	5	en_US
pubs.publication-status	Published	en_US
pubs.volume	27	en_US

Abstract:

© 2019, The Author(s). Personal genomic tests (PGTs) for multiple purposes are marketed to ostensibly healthy people in Australia. These tests are generally marketed and purchased online commercially or can be ordered through a health professional. There has been minimal engagement with Australians about their interest in and experience with ordering a PGT. As part of a multistage, interdisciplinary project, an online survey (Stage 2 of the Genioz study) was available from May 2016 to May 2017. In total, 3253 respondents attempted the survey, with 2395 completed Australian responses from people with and without experience of having a PGT: 72% were female; 59% of the whole sample were undertaking/or had a university education; and, overall, age ranged from 18—over 80. A total of 571 respondents reported having had a genetic test, 373 of these classifiable as a PGT. A bivariate analysis suggests people who have undergone PGT in our sample were: women aged 25 and over; or in a high socioeconomic group, or have a personal or family diagnosis of a genetic condition (P ≤ 0.03). After a multivariate analysis, socioeconomic status and a genetic condition in the family were not of significance. The most common types of PGT reported were for carrier status and ancestry. Findings suggest greater awareness of, and an increasing demand for non-health related PGT in Australia. To support both consumers and health care professionals with understanding PGT results, there is a need for appropriate support and resources.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/134918