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


Journal

European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235

Informations de publication

Date de publication:
05 2019
Historique:
received: 13 07 2018
accepted: 22 11 2018
revised: 22 10 2018
pubmed: 23 1 2019
medline: 13 6 2020
entrez: 23 1 2019
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 30666046
doi: 10.1038/s41431-018-0325-x
pii: 10.1038/s41431-018-0325-x
pmc: PMC6461785
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

711-720

Subventions

Organisme : Wellcome Trust
Pays : United Kingdom

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Auteurs

Jacqueline Savard (J)

Deakin University, School of Medicine, Faculty of Health, Geelong, Victoria, Australia.
The University of Sydney, Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, Sydney, NSW, 2006, Australia.
Garvan Institute of Medical Research, Sydney, Australia.

Chriselle Hickerton (C)

Genetics Education and Health Research, Murdoch Children's Research Institute, Melbourne, Australia.

Rigan Tytherleigh (R)

Genetics Education and Health Research, Murdoch Children's Research Institute, Melbourne, Australia.
Department of Paediatrics, The University of Melbourne, Melbourne, Australia.

Bronwyn Terrill (B)

Garvan Institute of Medical Research, Sydney, Australia.
Genome.One, Sydney, Australia.
St. Vincent's Clinical School, University NSW, Sydney, Australia.

Erin Turbitt (E)

Genetics Education and Health Research, Murdoch Children's Research Institute, Melbourne, Australia.
Department of Paediatrics, The University of Melbourne, Melbourne, Australia.
National Human Genome Research Institute, Bethesda, MD, USA.

Ainsley J Newson (AJ)

The University of Sydney, Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, Sydney, NSW, 2006, Australia.
Garvan Institute of Medical Research, Sydney, Australia.

Brenda Wilson (B)

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.
Memorial Hospital, St John's, Newfoundland, Canada.

Kathleen Gray (K)

Health and Biomedical Informatics Centre, The University of Melbourne, Melbourne, Australia.

Clara Gaff (C)

Department of Paediatrics, The University of Melbourne, Melbourne, Australia.
The Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia.

Anna Middleton (A)

Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.

Elaine Stackpoole (E)

Department of Paediatrics, The University of Melbourne, Melbourne, Australia.
Genetic Services of Western Australia, Subiaco, WA, Australia.

Sylvia A Metcalfe (SA)

Genetics Education and Health Research, Murdoch Children's Research Institute, Melbourne, Australia. sylvia.metcalfe@mcri.edu.au.
Department of Paediatrics, The University of Melbourne, Melbourne, Australia. sylvia.metcalfe@mcri.edu.au.

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