Australians’ expectations of personal genomics: the GeNIOz project
The Genioz (Genomics: National Insights of Australians) multidisciplinary study is funded by the Australian Research Council and aims to understand the Australian public’s understanding, experiences and expectations of personal genomic testing. This type of testing is typically available through the internet (also known as direct-to-consumer) and can cost several hundred dollars. Tests are advertised for a variety of purposes, such as: risk of disease (for a broad range of severities); physical characteristics (eg bitter tasting); response to drugs (pharmacogenetics); ancestry and relationship testing; fitness and sporting ability; and response to diet (nutrigenetics). This last category is now being advertised as “genomic wellness” in Australia, often through alternative medicine practitioners. Much of the clinical usefulness of these tests in a healthy population is currently highly dubious. Some tests can be ordered online even without the involvement of a health professional.
There is a lack of unbiased material to help Australians make informed decisions about whether to undertake personal genomic testing or not, and how useful their genomic information would be for them, and our study findings will address this.
The project consists of several stages of data collection and analysis: focus groups, national online survey, one-on-one interviews, deliberative workshops and ethical critique. Following the first stage of GeNIOz, in which seven focus groups were held in Melbourne and Sydney in 2015, we now are undertaking a national online survey to gather quantitative data in the following domains: awareness of personal genomic testing; demographics; knowledge and attitudes; experiences with genetic testing; ordering personal genomic testing; and regulation of personal genomic testing. We are also interviewing participants who consent to be contacted to provide in-depth qualitative data about their views and experiences.
The survey will be open until April 2017 (ie a year) and is available at www.genioz.net.au
- Australian Research Council (ARC)
- National Health & Medical Research Council (NHMRC)
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