Ethical issues in big data: A qualitative study comparing responses in the health and higher education sectors

• Published in: PloS one 2023-04, Vol.18 (4), p.e0282285-e0282285
• Main Authors: Braunack-Mayer, Annette, Carolan, Lucy, Street, Jackie, Ha, Tam, Fabrianesi, Belinda, Carter, Stacy
• Format: Article
• Language: English
• Subjects: Analysis; Australia; Big Data; Biology and Life Sciences; Computer and Information Sciences; Confidentiality; Consent; Data analysis; Data collection; Datasets; Distance learning; Education; Ethics; Evaluation; Health risks; Higher education; Humans; Information sharing; Information technology; Interviews; Legal issues; Medical ethics; Medical research; Medicine and Health Sciences; Privacy; Qualitative analysis; Qualitative Research; Questions; Research ethics; Science Policy; Social Sciences
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0282285

The health and higher education sectors are increasingly using large administrative datasets for secondary purposes. Both sectors experience ethical challenges in the use of big data. This study identifies and explores how these two sectors are responding to these ethical challenges. Through in-depth qualitative interviews, we asked 18 key Australian stakeholders using or sharing big data in the health and higher education sectors to identify the ethical, social and legal issues associated with big data use and their views on how to build ethical policies in this area. There was strong agreement between participants in the two sectors in a number of areas. All participants believed in the benefits of data usage and recognised the importance of privacy, transparency and consent, and the duties for data custodians which followed from these principles. However, there were also significant differences. The participants in the two sectors took different views on what data are for, what benefits data should provide, who should benefit and how, and the imagined unit of analysis for working with data. Broadly, participants from the higher education sector approached these questions with individual students in mind, while health sector informants approached these questions with collectives, groups, or publics in mind. In deciding what to do, the health participants drew principally on a shared toolkit of legislative, regulatory and ethical instruments, and higher education participants on a culture of duties towards individuals. The health and higher education sectors are responding to ethical challenges in the use of big data in different, but potentially complementary, ways.