Sensitive data: legal, ethical and secure storage issues
The legal framework around privacy in Australia is complex and differs between states. Many Acts regulate the collection, use, disclosure and handling of private data. There are also many ethical considerations around the management and sharing of sensitive data. The National Health and Medical Research Council (NHMRC) has developed the Human Research Ethics Application (HREA) as a replacement for the National Ethics Application Form (NEAF). The aim of the HREA is to be a concise streamlined application to facilitate efficient and effective ethics review for research involving humans. The application will assist researchers to consider the ethical principles of the National Statement of Ethical Conduct in Human Research (2007) in relation to their research.
National security standard guidelines and health and medical research policy drivers underpin the need for a national fit-for-purpose health and medical research data storage facility to store, access and use health and medical research data. med.data.edu.au is an NCRIS-funded facility that underpins the Australian health and medical research sector by providing secure data storage and compute services that adhere to privacy and confidentiality requirements of data custodians who are responsible for human-derived research datasets.