CTRL: Managing your personal 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 (see the relevant consent form for you at the flagship links below).

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.

Mitochondrial Flagship
Child, 12-17 years, and adult consent forms.

Neuromuscular Flagship
Child, 12-17 years, and adult consent forms.

Targeted Treatment on Clinical Gene Panels (Solid Tumours) Flagship
Adult consent form.

KidGen Renal Genetics Flagship
Child, 12-17 years, adult, parent/adult relative consent forms.

Genetic Immunology Flagship
Child, 12-17 years, and adult consent forms.

Hereditary Cancers (ICCon) Flagship
Child, 12-17 years, and adult consent forms.

Epileptic Encephalopathies Flagship
Child, and 12-17 years consent forms.

Brain Malformations Flagship
Child, and 12-17 years consent forms.

Acute Lymphoblastic Leukaemia
Child, 12-17 years, and adult consent forms.

However, we understand that participants often want to better understand, and have more control over, who uses their information, so we are introducing a new online, personalised platform, which will allow you to choose more specific consent options. You will be able to choose organisations that can use your information and what kinds of research they can do with it. You will also be able to change your consent preferences at any time, if you want to.

This is often referred to as dynamic consent, and it’s a new way of approaching consent.

You will also be able to keep your personal information up to date, indicate how regularly you would like us to be in contact with you, and complete the patient surveys you agreed to take part in when you signed up. It’s going to be a convenient place to keep all of the information about your participation in the study, which you can access either on your computer or mobile phone.

We also understand that many participants want to be more active partners with us in research. Therefore, through your personalised platform you will be able to access publications your involvement in the study has contributed to and research reports, keep up to date with our research in the media, as well as access information about genomic medicine, your condition and other opportunities to be involved in research.

You’ll be able to communicate with us and we can help you get in contact with other people affected by the same health condition as you.

Because we are just launching CTRL, we need some of our participants to help us test and make it better. If you would like to be a part of our pilot participant group and give us feedback, please get in touch with us by emailing australian.genomics@mcri.edu.au



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