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How will GenV look after my information?

GenV has many strong measures to ensure your information is stored in a secure and safe way, and kept confidential.

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.

The data repository holding your data is purpose-built for GenV, and held by the Murdoch Children’s Research Institute at the Royal Children’s Hospital. Our use of data is governed by Australian privacy laws.

We also collect some basic contact details from you when you join GenV, so that we can contact you in the future. We call this ‘personal information’ and we store this in our participant database, which is different to the data repository. Personal information is always kept separate to other information throughout GenV.

All of your personal information is ‘de-identified’

Any research information is kept separate to the participant database where your personal details are held, and all GenV’s research information has been de-identified.

De-identified information means none of your research data will contain any personal information about you or your child. This is to protect your privacy.

Unless you tell us to remove access to it, we will use your and your child’s data to support new discoveries about children and families like yours for decades to come.

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

We also use the Five Safes Framework. This framework uses five different approaches to further protect the privacy of your data within de-identified research information.

This is a common and strong framework for protecting your privacy that has been adopted by the Australian Bureau of Statistics (ABS), several other Australian government agencies as well as national statistical organisations such as the Office of National Statistics (UK) and Statistics New Zealand.

How will researchers use my data?

GenV only shares data with those working for the community to improve the health and wellbeing of children and their parents.

Over time, researchers will use lots of different methods to answer important questions. Some data and samples can only be analysed in specialised laboratories. This is common in research, and happens under strict guidelines and laws for approval.

When researchers and service providers work with data, they often create new information (perhaps from laboratory tests, or by combining data in new ways) which is added back into GenV. This creates more opportunities to improve health. Therefore, the value of your information will keep growing and become more helpful for many years.

Some GenV participants may also be asked to join research trials testing new approaches. Others may join studies about specific issues (like head injuries or hearing loss). If the consent you have already given us (or to these studies or trials) does not cover your participation, you will always need to confirm additional consent to be given before we include you or share your data. GenV supports this, so long as the studies are ethically approved.

Any organisation that uses GenV data can’t make copies, so it is always in GenV’s secure and protected environment.

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.
  • GenV carefully assesses the researcher and the institution.
  • Samples or data are used without any personally identifying details – so there are no consequences for you.