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Updated: Sep 5, 2025

Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
Health Technology and Big Data: Social Licence, Trust and the Law
Bernadette Richards1, James Scheibner2
1Associate Professor of Ethics and Professionalism, Medical School, University of Queensland.
Abstract:
Technology is empowering advances in health care, extending beyond the clinical interface to the collection, collation and use of personal data. While this advance has the potential for population-wide benefits, there are legal and ethical challenges which carry the risk of both individual and collective harms. This section critically appraises the existing approach to the governance of health data in Australia. This approach is grounded in the principles of autonomy, privacy and respect for individual choice. This section then identifies the broader imperatives of social good, public health, improvement of outcomes and advancement of knowledge and the importance of balancing individual and collective interests. Central to this discussion are the concepts of social licence and avoiding ethical debt. A significant challenge to the appropriate sharing and use of health data are the existing regulatory barriers (both perceived and actual) and these are explored in some detail.
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