ETHICS & PRIVACY

ETHICS

The primary role of an ethics committee is to protect the welfare and rights of research participants. In Australia, Human Research Ethics Committees (HRECs) are generally comprised of people with and without a health research background who, as a group, will only approve research if it is conducted with integrity and respects the rights and welfare of participants.

ASPREE and ASPREE-XT collaborate with multiple universities, health care services and thousands of GPs in Australia, requiring review and approval by multiple HRECs.

ASPREE and ASPREE-XT have been ethically reviewed and approved, with study progress monitored in accordance with the Australian Government’s National Health and Medical Research Council’s (NHMRC) National Statement on Ethical Conduct in Human Research (2007).  In addition, the project has been designed, and is conducted, in accordance with the Australian Code for the Responsible Conduct of Research (2007). This means that our work must have research merit and be conducted with integrity, justice, beneficence and respect. The project must also comply with state-based Privacy Acts, such as the Victorian Privacy and Data Protection Act 2014 and the Victorian Health Records Act 2001.

We provide regular ongoing reports to the multiple HRECs overseeing the project. These reports describe study progress, participant safety, data security, complaints and any other issues of ethical relevance.

PRIVACY

Participant privacy is protected in a number of ways:

• All participants are allocated an ID number in place of personal information such as name and address.
• Information we collect is entered into a highly secure database. Access to the database is only made available to registered study staff via a password-protected and secure login.
• Data held at the ASPREE locations is locked within a secure environment both physically (paper files) and electronically.
• Data collection, storage and management is centralised at the ASPREE National Co-ordinating Centre in Melbourne, allowing us to track the location of files at any time.
• Our staff have been trained and understand the importance of confidentiality and privacy protection.  All staff signed confidentiality agreements as part of their employment for the project.