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How will GenV look after my information?

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

When you decide to join GenV, you give us permission to access and join information about your physical and mental health, education, and social data from other places to build a more complete picture of children and their families. 

We also collect some basic contact details from you when you join GenV, so that we can contact you in the future. 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. 

Our use of data is governed by Australian privacy laws. GenV only shares data with those working for the community to improve the health and wellbeing of children and their parents.  

Researchers need approval to use GenV’s samples and health data. They can only use samples and data for research to benefit people’s health and wellbeing. They cannot access personal details.   

GenV has strict rules to review data users and their proposed research to ensure they are qualified to use the data. Everyone who uses GenV data meets the following requirements: The research aims to improve the health, development or wellbeing of children and the adults they become.  

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 FrameworkThis 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 within 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 from all walks of life. 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 child health, development and wellbeing in Victoria and beyond.