We are now in the process of writing publications from the data collected for all stages of the Genioz study: Focus groups; Survey; Interviews and Deliberative workshops (public forums), Ethical Critrique.
In the coming months we will share the findings on the website here.
Scroll down to read the following:
- Genioz study design
- Focus group findings
- Survey findings
- Coming soon - interview findings
Here is our study design:
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
Data collection from all stages of this project has concluded. 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.
The team has been working on an information resource for anyone who is thinking about having a PGT. Click here to read.
From all the members of the research team, we would like to sincerely thank the participants for taking time to participate in this research.
Stage 2: Survey findings
From 2016-2017, Stage 2 of our Genioz data collection involved a nationwide survey about knowledge, attitudes and experiences with personal genomic testing (PGT).
What did we do?
Building on from what we learnt in the focus groups (Stage 1), questions found from published studies and team expertise, we asked questions about:
- People’s knowledge of genetic concepts
- If people had a PGT, what did they have, how was it arranged, did they take any action, and who did they share their test information with?
- If people hadn’t had a PGT, would they consider having one and if so, which tests?
- If people did not want a PGT, what were their reasons?
- Where people would turn to for help to interpret a PGT
- Thoughts about buying a test overseas or in Australia and comfort with whom they would share their genetic information
How did we recruit?
We hosted the survey on the Genioz website and advertised through our research networks and newsletters, various community groups, a market research company and Facebook and Twitter. For social media recruitment, we created memes and posed thought provoking questions.
Here is an example of two of our posts:
Here is an overall summary of the characteristics of the Australian respondents:
What did we find?
Before this survey, had people in our sample heard of personal genomic tests?
- A majority of people in our sample had heard about personal genomic tests. The 3 most common ways were through films, television or other media such as news articles
Had people in our survey had a personal genomic test?
- 571 people reported having had a genetic test
- 373 of these had a personal genomic test as classified by the research team
- Ancestry and carrier testing were the most common types of personal genomic tests ordered, most commonly arranged by the survey respondent and ordered online
- Other tests reported to a lesser degree included: wellness, for serious and preventable or serious and non-preventable conditions, prenatal testing, fitness, pharmacogenomics
- We found that people in our sample were more likely to have carrier testing if they were aged 20-49, and people aged 50 and over were more likely to have ancestry testing
What have people done with their genomic test information?
- Of those who had a health-related test, the most common action was to seek medical advice or do nothing with the information from tests results
- Many who had a personal genomic test for nutrition/wellness sought advice from complimentary health practitioners (naturopaths) or integrative GPs with 60% reporting they had changed their diet
- Some respondents reported downloading their raw data and using a third party interpretation website/tool for further genealogical or health related information
What about people who had not had testing?
- Of the people who had not had testing, more than half had not thought about testing before
- Other reasons for not having had a test included: cost, not knowing how to arrange a test, potential negative impact for self or family and concerns about third party access or discrimination
Where would people go if they needed help with interpreting a personal genomic test?
- People reported that they would approach a primary care physician, specialist or genetic specialist for help to interpret either health or non-health related tests
- Other preferences to find out information for non-health related tests included online forums and networks
Most people when asked, were happy that they had the test. Of those who had not had a test, less than half reported they would now consider (at end of survey) having a test for one or more of the following: conditions that are serious and preventable, carrier testing, ancestry testing, conditions that are serious but not preventable, pharmacogenetics, nutrition/wellness, conditions that are not serious, fitness, traits, relationship testing
We found in our sample, an awareness and demand for personal genomic testing (especially for ancestry purposes) in Australia. With this, comes a need for accurate and appropriate resources and support for those who pursue testing.
We have presented the findings at a number of conferences in Australia and overseas and have published the main findings in two international journals. If you would like to read them, you can click here and here. A selection of respondents from the survey who indicated an interest in being contacted further, participated in a telephone interview (Stage 3). The summary will be added to this page soon.
The findings from the survey and interviews informed the final stage of data collection (Stage 4) of the Genioz study, deliberative workshops.
The team has developed community resources for anyone who is thinking about having a PGT.
From all the members of the research team, we would like to sincerely thank all survey respondents for taking time to participate in this research.