CTRL: Managing your Australian Genomics consent and research participation!
If you’ve already agreed to participate in the Australian Genomics study and receive genomic testing, you will have signed one of our consent forms.
As a part of the consent process, you would have talked through some of the unique aspects of having genomic testing compared to other more routine laboratory tests, as well as being asked whether you agree to share your samples and genome data.
We seek your permission to share this information with other people we do research with, for current and future research projects.
We understand that participants want to have more control over their involvement in research.
So, we are piloting a new online platform, which will allow you to choose more specific consent options and receive information about the research you are participating in.
It is called CTRL ('control').
CTRL is a convenient place to keep all of the information about your participation in the study. It can be accessed either on your computer or mobile phone.
Using a tool like CTRL to communicate your consent preferences is a new way of approaching consent, called ‘dynamic consent’. Since it is new we need to test the CTRL platform with a pilot study.
People that are invited to participate in the CTRL pilot study will be able to use the platform to:
- keep their personal information up to date
- change their consent preferences for the Australian Genomics study
- choose the types of organisations that can use their information and what kinds of research they can do with it, and;
- complete their patient surveys.
By registering with the platform participants will also be kept up to date with Australian Genomics research and activities.
Once the pilot study of CTRL is completed we will open the platform up for everyone participating in an Australian Genomics study to use.
If you have any questions or comments about CTRL or the CTRL pilot study, please get in touch with us by emailing firstname.lastname@example.org