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

Savard, Jacqueline, Hickerton, Chriselle, Tytherleigh, Rigan, Terrill, Bronwyn, Turbitt, Erin, Newson, Ainsley J., Wilson, Brenda, Gray, Kathleen, Gaff, Clara, Middleton, Anna, Stackpoole, Elaine and Metcalfe, Sylvia A. 2019, Australians’ views and experience of personal genomic testing: survey findings from the Genioz study, European journal of human genetics, vol. 27, no. 5, pp. 711-720, doi: 10.1038/s41431-018-0325-x.

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Title Australians’ views and experience of personal genomic testing: survey findings from the Genioz study
Author(s) Savard, JacquelineORCID iD for Savard, Jacqueline orcid.org/0000-0002-7965-6103
Hickerton, Chriselle
Tytherleigh, Rigan
Terrill, Bronwyn
Turbitt, Erin
Newson, Ainsley J.
Wilson, Brenda
Gray, Kathleen
Gaff, Clara
Middleton, Anna
Stackpoole, Elaine
Metcalfe, Sylvia A.
Journal name European journal of human genetics
Volume number 27
Issue number 5
Start page 711
End page 720
Total pages 10
Publisher Nature Publishing Group
Place of publication London, Eng.
Publication date 2019
ISSN 1018-4813
1476-5438
Keyword(s) Science & Technology
Life Sciences & Biomedicine
Biochemistry & Molecular Biology
Genetics & Heredity
PUBLIC KNOWLEDGE
GENETICS
HEALTH
PERCEPTIONS
ANCESTRY
ATTITUDES
CONSUMERS
USERS
Summary © 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.
Language eng
DOI 10.1038/s41431-018-0325-x
Indigenous content off
Field of Research 0604 Genetics
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2019, The Author(s)
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30130998

Document type: Journal Article
Collections: Faculty of Health
School of Medicine
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.