Ms Minna Paltiel1, Associate Professor Bernadette Richards2
1Melbourne Law School, University Of Melbourne, 2The University of Queensland Medical School
Ethical debt is incurred when technology is applied without consideration of potential harms and ethical consequences. Ethical debt accumulating in the use of big health data presents a serious challenge to health data governance. Laws struggle to keep up with advances in medical and research technologies and the ease and speed with which large amounts of health data are collected and processed. As a result, use of health data may strictly comply with law, and yet be contrary to the interests of a particular community or individual. This is true even when health data is used altruistically for public benefit, but nevertheless in a manner which is not aligned with the privacy interests of data subjects.
In this presentation, in answer to the question – is ‘more law’ what is needed to address this problem, we suggest that, rather than more ‘rules’, it is helpful to incorporate fiduciary principles into laws governing health data use. We refer to the ‘information fiduciary’ model and discuss aspects of the model which compel consideration of ethical consequences in the use of health data, such as: the model’s basis in equity, a field of law concerned with fairness and natural justice; the centrality of ‘trust’ in the fiduciary relationship; and, the fiduciary’s duty to exercise discretion in a manner that will not harm the interests of the object. Lastly, we consider the ways fiduciary principles are being incorporated into data protection and privacy laws of other jurisdictions and the implications for health data use.
Biography:
Minna is a PhD candidate at Melbourne Law School and part of the HeLEX Centre (Health, Law and Emerging Technologies) and a practising lawyer. She is a member of the Patron Data Governance Committee (part of the Data for Decisions research initiative, University of Melbourne, Department of General Practice). Minna’s research focuses on privacy protection in the international sharing of health data, and in particular, genomic data. Minna has presented at workshops and conferences on international data sharing and secondary uses of health data, and authored papers including on privacy protection of health data under Australian statute and on ethics in information sciences training. Minna has also published regarding intellectual property and consumer protection on the internet.
Bernadette is an Associate Professor of Ethics and Professionalism at University of Queensland Medical School. Previously she worked on the Future Health Technologies Project at the Singapore ETH Centre, Campus for Research Excellence and Technological Enterprise (CREATE), Singapore, exploring trustworthy data governance. Bernadette is an Adjunct Associate Professor of Law at the Queensland University of Technology Australian Centre for Health Law Research and Adelaide Law School and a member of the NHMRC’s Australian Health Ethics Committee, the Embryo Research Licensing Committee and Dietary Guidelines Governance Committee and the South Australian Voluntary Assisted Dying Taskforce. Bernadette previously acted as Chair of the Mitochondrial Donation Expert Working Committee and was involved in the proposed amendment to the law. She is the President of AABHL and has completed major projects on organ donation, consent to treatment and legal issues around innovative surgery. Bernadette is a chief investigator on three current major grants. Her co-authored book, ‘Technology, Innovation and Healthcare: An evolving relationship’ was published in February 2022 and she has published over 90 journal articles, book chapters and books.