Researchers at the University of Melbourne, Monash University and Garvan Institute of Medical Research would like to hear your views about receiving genomic information related to risk of developing health conditions discovered from research participation. In 2024, this project engaged with ABC Study participants by inviting them to join focus groups, which involved a small number of participants, however, for this part of the project the research team is looking for as many research participants as possible to contribute.
Study Outline
Genomic sequencing is a way researchers read your DNA – the set of instructions that makes you who you are. By studying DNA, researchers can learn more about health and disease, which improves health care.
Sometimes, when researchers analyse DNA, they find health-related genetic information that wasn’t the original focus of the research. For example, a research study about heart disease might discover that someone has increased genetic risk of developing cancer. The genetic information might be related to something that can be clinically prevented or treated early, like an increased risk of cancer. Or it might be linked to something that can’t be clinically prevented or treated, like an increased risk of dementia.
This study is exploring what types of genetic information research participants, such as ABC Study participants, would like to learn about and how they value support when receiving that information. The researchers need your help to understand what is important to research participants.
This study is sponsored by the National Health and Medical Research Council and approved by the University of Melbourne Human Research Ethics Committee reference: 2024-26030-50945-10.
What’s involved
You will be provided with a more detailed description of what the study involves and asked to complete an online consent form. After providing consent, you will be asked to complete a short questionnaire about yourself. You will then be provided with a brief description of what genetic information could be found and how that information could be communicated to you. Then, you will be asked to make choices about what genetic information you would be interested in learning about, and make a series of choices between different ways you could be supported in receiving that genetic information.
This survey will take approximately 20 minutes.
How Do I Take Part?
Click on the link below to begin the survey:
Click Here
Or copy this link into your browser:
http://survey-au.yoursurveynow.com/survey/selfserve/53b/2607301?list=0&c=19&w=1
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