Ms Lucy Carolan1
1Australian Centre For Health Engagement Evidence And Values, Wollongong, Australia
The health and higher education sectors are increasingly using large administrative datasets for secondary purposes. Both sectors are experiencing similar ethical challenges in the use of big data. This study explores how these two sectors are responding to these ethical challenges.
Objectives and Approach:
Through in-depth qualitative interviews, we asked 17 key Australian stakeholders using or sharing big data in health and higher education to identify the ethical, social and legal issues associated with big data use and their views on how to build ethical policy in this area.
Although participants reported similar ethical issues – related to privacy and confidentiality, transparency, consent, public trust, and potential benefits – they had quite different emphases. Higher education participants were particularly concerned about securing student consent for data use, whereas health participants believed that inadequate public information about data use and the lack of communication regarding legislative oversight of data were key challenges. Health sector participants described regulatory and policy frameworks for managing ethical issues in the use of big data, by contrast participants in the higher education sector repeatedly spoke about the lack of formal policies and systems. The differing accounts between health and education of ethical issues in big data use reflected different conceptualisations of the nature and role of data subjects, that is, data subjects at a population versus individual level.
Conclusion / Implications:
The health and higher education sectors are responding to ethical challenges in the use of big data in different, but potentially complementary, ways.
Big data, Ethics, Public sector, Health data, Learning analytics, Privacy, Consent, Public trust
Annette Braunack-Mayer, University of Wollongong,
Lucy Carolan, University of Wollongong,
Jackie Street, University of Wollongong,
Stacy Carter, University of Wollongong,
Tam Ha, University of Wollongong,
Belinda Fabrianesi, University of Wollongong,
Lucy Carolan Public Health Hons (University of Wollongong), is a Research Assistant at the Australian Centre for Health Engagement, Evidence and Values (ACHEEV), School of Health and Society, University of Wollongong.
Lucy is part of a team with expertise in the use of deliberative inclusive methods and community engagement; world cafes, dialogue groups and citizens’ juries, to research community views on contentious policy issues relating to the ethical, social and policy challenges associated with the use of big data.