How will GenV look after my information?

GenV is committed to ensuring your personal information remains secure and private.   

The way we look after your information is based on best-practice worldwide. We store all information in secure environments and perform regular security testing. We apply layers of security controls to protect your data including (but not limited to) regular training and the use of standard operating procedures, secure access controls, data encryption, security monitoring, application of regular security updates, risk and security reviews, independent security testing, and network security protection.

Our use of data is bound by Australian and Victorian privacy laws. To see our Privacy Collection Notice and MCRI’s Privacy Policy, visit www.genv.org.au/privacy.

Researchers need approval to use GenV’s samples and data. They can only use samples and data for research that aims to improve health, development, or wellbeing.

GenV has strict rules to review data users and their proposed research to ensure they are qualified to use the data. They cannot access personal details like names.

You always have the right to access and correct the personal information we collect and store about you and your child under privacy laws. You can do this at any time by contacting GenV. 

We also protect your information with the Five Safes Framework. This is a common and strong framework for protecting your privacy that has been adopted by agencies world-wide, including the Australian Bureau of Statistics (ABS).

Will my information be sold for profit?

GenV is a major research initiative of the Murdoch Children’s Research Institute. Murdoch Children’s Research Institute is based at The Royal Children’s Hospital. It is Australia’s largest and most successful child health and medical research centre, with a dedicated and diverse team of over 2,000 researchers and staff.

Murdoch Children’s Research Institute is a registered not-for-profit. All financial proceeds received by Murdoch Children’s Research Institute support research that improves the lives of millions of children each year in countries around the world. The research spans more than 150 common and rare diseases and conditions affecting infants, children and adolescents.

The goal of GenV is to create a data resource to improve the lives of children and their families. Your data will never be sold to a third party. GenV may charge an administrative fee for access to the data resource to cover the costs of secure data storage, data management and biosample processing and ongoing management.

The success of GenV will be measured by its broad use to achieve a better approach to health, development and wellbeing in Victoria and beyond.