15 July 2016
The Garvan Institute of Medical Research is working with leading Australian universities and research institutes on a new Australian Research Council-funded study called Genomics: National Insights of Australians (Genioz). Genioz aims to understand what Australians (and the rest of the world) expect of new genetic technologies that provide people with access to their own genetic information.
Traditionally, genetic testing has involved looking at one section of an individual’s DNA at a time. Now, however, technologies can be used to analyse thousands of DNA sections at once, and even an entire genome, at a relatively low cost. These genetic tests, or personal genomics, can be used in many different ways, such as determining ancestry or paternity, or gaining insights into one’s health. Many of these tests can be bought online by anybody, and often require no more than a saliva sample, which is typically mailed to a private testing lab.
Professor Sylvia Metcalfe (University of Melbourne and Murdoch Children’s Research Institute), who is leading the Genioz study, says, “We know Australians can access these online personal genomic tests which are available from local or overseas-based companies, but there is little unbiased information to help people make informed choices about whether or not they might want such a test or what implications test results will have for them or their families.
“Our study aims to find out more about what Australians think about this type of testing and what they would or would not like to know about their own genetic make-up. Our ultimate aim is to support people to make informed decisions and to advise policy makers.”
To investigate public knowledge, attitudes and awareness of personal genomics, Genioz is using an online survey. Results from the survey will inform recommendations for programs and resources to empower the Australian public to make informed decisions about their own use of personal genomic technologies.
More than 500 people have already completed the online survey, but the researchers want to hear from thousands of people across Australia and the world – even if they don’t think they know much about genetics or the tests being offered. Anyone over the age of 18 can participate.
It’s your information, but what would you do with it? Tell GeNIOz what you think!