We are now in the process of analysing the data collected for 4 stages of the Genioz study: Focus groups; Survey; Interviews and Deliberative workshops (public forums).
In the coming months we will share the findings on the website here
Stage 1: Focus group findings
Update as of May 2018
In 2015, the Genioz study began data collection. Individuals participated in a focus group about the Australian public’s views of personal genomic testing. This was the first of four stages of data collection for the study. Here is a summary of our findings for Stage 1.
What did we do?
We wanted to find out what people thought about personal genomic testing (PGT), which provides healthy individuals with access to information about their genetic makeup for purposes such as: health, ancestry, paternity and sporting ability. These are available commercially and globally.
We asked participants about general topics including: their general perception of genetic concepts and where those came from, why people may want to have a PGT, possible benefits and harms of testing and whether participants would have a PGT for themselves.
Overall, we hosted 7 focus groups (4 Melbourne, 3 Sydney) with 56 participants, split into 3 different age groups:
What did we find?
- Awareness of genetic concepts varied a lot across the focus groups
- Participants found information about genetics from many different sources and described different ways they determined what they thought was genuine
- Awareness of the terms ‘personal genomics’ and ‘direct-to-consumer’ (a term used by experts) testing was low to no awareness
- Participants varied in whether they thought genetics and/or the environment influenced things such as: health, mental health, behaviour, talent or personality
- Views among participants about having a personal genomic test for themselves were mixed. Participants showed greater interest in health-related tests if they believed there was a reason for doing so
- Many expressed scepticism about the types of tests available and how the information might be used. Concerns were also raised about privacy and the potential for discrimination
We have presented the findings at a number of conferences in Australia and overseas and have published the main findings in an international journal. If you would like to read it, you can click on this link. The findings of the focus groups informed Stage 2 of the Genioz study, a national survey. Data collection from all four stages of this project has now concluded.
The team is currently working on an information resource for anyone who is thinking about having a PGT.
From all the members of the research team, we would like to sincerely thank the participants for taking time to participate in this research.