The ethical, legal, and social acceptability of health data linkage in the Australian context: an investigation of current practices, perceptions, and public attitudes.

Abstract

Vast collections of electronic data are held by a variety of health organisations, including government and non-government agencies, hospitals and universities. Data linkage involves combining such data sets for secondary purposes such as population health research. Data linkage currently occurs in Australia and is rapidly developing into a key tool both for Government and researchers. There are considerable benefits to data linkage, including the ability to conduct high quality research which may lead to advances in clinical practice, the development of public health policy, the prevention of disease, the conduct of public health surveillance. However, the associated ethical and legal issues require analysis and consideration to determine the moral and legal ramifications of such uses of data and so that indeterminate ethical and legal issues do not restrict agencies’ and researchers’ ability to fully support a co-ordinated national approach to data linkage. Lagging substantially behind recent developments in Australia and internationally is knowledge and clarity about the public’s acceptance of data linkage practices. This thesis presents findings of a multi-phase project comprising a theoretical component and two empirical studies. The theoretical component examines the ethical, legal and social acceptability of data linkage (Phase 1), and two empirical components (Phases 2 and 3) present the views of community members about data linkage. In Phase 1 I argue that the non-consensual use of data is morally acceptable under certain conditions. It is currently legally acceptable in Australia despite certain impediments arising from the strict interpretation and complexity of Australian privacy legislation, an issue which is currently being addressed through amendments to the Australian Commonwealth privacy legislation. Phase 2 comprised in-depth face-to-face interviews to determine participant views in relation to privacy and their preferred consent options in four hypothetical data linkage scenarios. Phase 3 involved the administration of a questionnaire before and after a citizens’ jury to gauge, amongst other issues, these citizens’ attitudes to health data linkage and to determine whether the provision of detailed information about the data linkage process, as well as the ethical and legal issues it raises, had an impact on previously held views and perceptions. Participants quickly acquired an understanding of data linkage. They generally supported the non-consensual use of data provided that there were protection mechanisms in place such as the removal of identifiable data. Most participants believed that consent should be sought for data linkage projects if the linkage were being conducted by researchers with fully identifiable data. Participants weighed up opposing values such as the need for privacy against the potential benefits arising from data linkage research using an informal moral reasoning framework. The wealth of justifications for their decisions highlighted the participants’ values. This research aims to contribute to the Australian and international literature at a time when this method of combining data is being considered by researchers world-wide. In addition, the findings will assist in discussions and activities in relation to the development of the national data linkage framework, a key Australian Government research target within the next five to ten years.