The Genioz Study
Personal genomic testing, what is it and what does it mean for Australians?
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.
Following the first stage of Genioz, in which seven focus groups were held in Melbourne and Sydney, a national online survey has been launched 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.
Participants who consent to be contacted for an interview will provide in-depth qualitative data about their views and experiences. To date more than 1600 people have responded to the survey. They have been recruited through a variety of means including personal and organisation networks as well as social media and community forums. However, the Genioz research team is keen to hear from more people and also broaden the recruitment to ensure there is a wide range of demographic representation.
The survey will be open until April 2017 and is available at www.genioz.net.au.