Australian Genomics’ policy on data access and sharing for secondary use, our data access and sharing agreement, and our data breach policy are all available below.
The purpose of this policy is to generate a framework around reasonable access to the data collected through clinical flagship projects in the Australian Genomic Health Alliance (Australian Genomics) for the purpose of secondary research use.
This policy is designed to reflect the opinions of flagships investigators, and respect the wishes of flagships participants: data collected will strictly be used in accordance with a participant’s consent for collection, use and data sharing.
Some participants will dynamically and granularly update their consent preferences through an online platform (CTRL). The expressed or withdrawn consent is taken into account during the data access process.
Please note: This is the Australian Genomics standard data access and sharing agreement which cannot be modified or amended given that Australian Genomics requires all Recipients to comply with the same terms and conditions regarding data access and use.
Data access requests can be made at this link https://redcap.link/ag-data-access-form
Our Data Access Committee will then assess your request and organise the most suitable data access for your project.
This data breach policy defines what is considered a data breach and sets out procedures to follow in the event that Australian Genomics experiences (or is suspecting) such a data breach is occurring, or has occurred. It presents a framework nominating roles and responsibilities for the management of a data breach, depending on which Australian Genomics data tool(s) is being, or has been affected.
The aim of this policy and the response process it describes is to mitigate potential harm to affected individuals, by facilitating an efficient and comprehensive response to a suspected or confirmed data breach.