Sensitive data: legal, ethical and secure storage issues

Slides from the introduction to a panel session at eResearch Australasia (Melbourne, October 2016). Panellists: Kate LeMay (Australian National Data Service), Gabrielle Hirsch (Walter and Eliza Hall Institute of Medical Research), Gordon McGurk (National Health and Medical Research Council) and Jeff Christiansen (Intersect).Short abstractHuman medical, health and personal data are a major category of sensitive data. These data need particular care, both during the management of a research project and when planning to publish them. The Australian National Data Service (ANDS) has developed guides around the management and sharing of sensitive data. ANDS is convening this panel to consider legal, ethical and secure storage issues around sensitive data, in the stages of the research life cycle: research conception and planning, commencement of research, data collection and processing, data analysis storage and management, and dissemination of results and data access. 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.