Sensitive data: legal, ethical and secure storage issues

Slides from the introduction to a panel session at eResearch Australasia (Melbourne, October 2016). <br>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).<br><b>Short abstract</b>Human 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 <i>National
Statement of Ethical Conduct in Human Research (2007) </i>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.