Abstract
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.
Highlights
It is possible to obtain personal genomic information outside the context of a clinical or hospital setting, for example, through purchasing a personal genomic test10 The Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia11 Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK12 Present addressNational Human Genome Research Institute, Bethesda, MD, USA13 Present addressMemorial Hospital, St John’s, Newfoundland, Canada14 Present addressGenetic Services of Western Australia, Subiaco, WA, Australia (PGT)
By comparison with the Australian Bureau of Statistics 2011 census data (SF 3), our sample contains a greater proportion of respondents from higher socioeconomic indexes for areas (SEIFA) categories and captured a greater proportion of respondents from the age categories of 20–24 years and 55–65 years (SF 4)
There is a federal prohibition on advertising prescription drugs and medical devices direct-to-consumers [26], which includes the provision of health-related directto-consumer genetic tests
Summary
10 The Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia. National Human Genome Research Institute, Bethesda, MD, USA. Genetic Services of Western Australia, Subiaco, WA, Australia (PGT). These tests can be grouped into health-related and recreational-associated tests. Markets for the different types of PGT are variable, depending on the geographical location and the regulatory environment in which the company and consumers are located. Australian consumers can access PGT with or without a health care professional depending on the type of test they are seeking. They can obtain a test online from both onshore and overseas providers
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