Data, Privacy and Complaints - Australian Breakthrough Cancer Study

How is my personal information kept secure?

As a leading cancer research organisation, please be assured that we take the privacy of your data very seriously and the security of your information is a high priority. We adhere to strict operating procedures, based on recommendations from the Australian Cyber Security Centre, to ensure that information is stored securely. These include:

Storing data within highly secured Australian data centres
Removing personal identifiers, where possible
Only allowing access to personal identifiers to staff who need it and whose accounts are protected with Multi-Factor Authentication (MFA)
Performing regular security updates of servers and workstations

Our Privacy Policy, outlines how we handle your personal information. We only collect, use and disclose your information for the purpose that you have consented to, in order for us to deliver the service or support that you require or otherwise as required or authorised by law.

The ABC Study website runs in secure mode. Data travelling between your computer and the website are encrypted and cannot be accessed by a third party. We also run regular security testing to ensure the website itself has no vulnerabilities.

Any saliva, blood or poo samples you provide will be stored indefinitely at the Precision Medicine Biorepository at Monash University. They will be stored securely, and only authorised Cancer Council Victoria and Monash University staff will have access to them. Your biological samples will be labelled with a unique code and only designated staff will be able to link that code to you.

Can I access the data I provided to you?

In accordance with applicable Australian and Victorian health privacy legislation, you have the right to access certain information about you that is collected and held by us. You also have the right to ask for certain information to be corrected. Contact the study team on 1800 688 419 or email info@abcstudy.com.au if you would like to access your information. If you do so, once we verify your identity, you will receive a copy of all submitted questionnaires and responses, as well as any interpretable and applicable findings that have clinical significance to you that are available at the time of request.

Note: We need to collect and test samples from many people before we can draw meaningful conclusions. The research using the information you provide could take some years to complete.

What can l do if l have a complaint about the study?

If you have any complaints or concerns about the manner in which this research is being conducted or how your personal information is being handled, please contact Cancer Council Victoria's Human Research Ethics Committee, tel: (03) 9514 6200, email RGU@cancervic.org.au or contact the Office of Australian Information Commissioner at enquiries@oaic.gov.au or tel: on 1300 363 992.