Sharing clinical data for research – what do we mean by public benefit?
- Date: 15 August 2018, 10:00–12:00
- Location: Uppsala Biomedical Centre, Boströmrummet
- Type: Seminar
- Lecturer: Angela Ballantyne (BSc, PhD), Senior Lecturer in Bioethics at the University of Otago (Wellington, New Zealand).
- Organiser: Centrum för forsknings- & bioetik, Institutionen för folkhälso & vårdvetenskap
- Contact person: Stefan Eriksson
The future success of data research in health will depend on public trust. Effective use of health data can drive health sector innovation, save lives, and reduce harm to patients. Both the amount of data and the demand for data is increasing exponentially. In the age of big data, health databases are a valuable strategic asset.
But the public must trust that their health data is being managed fairly and responsibly. Empirical research shows that the public is more willing to share their clinical data for research when that research offers public benefit. This is reflected in many jurisdictions that require data sharing for research without consent to satisfy a ‘public good’ criterion. But what do we mean by public benefit?
This work draws on insights from bioethics, philosophy and social science to develop an innovative, robust and rich account of public benefit in relation to health data sharing. This draws on both substantive and procedural values. In this talk I will focus on three key substantive values: utility (reducing morbidity, mortality, and the costs of healthcare delivery); equity (using data to better understand and address existing health inequalities within a population); protecting the vulnerable (use of predictive risk modelling to prevent harm).
The moral legitimacy of clinical data-sharing with third parties without consent depends, in part, on meeting this public benefit standard. As a test case for this account of public good, I consider the case of the UK National Health Service (NHS) providing patient data to Google’s DeepMind AI program to develop an app to assist with early detection of kidney disease. Much of the critique of this data sharing arrangement has focused on privacy, but recent debate has turned to issues of strategic interests, ownership, and public benefit.
Bio: Angela Ballantyne (BSc, PhD)
Dr Ballantyne is a Senior Lecturer in Bioethics at the University of Otago (Wellington, New Zealand). Her research interests include exploitation, research ethics, vulnerability, the ethics of pregnancy and reproductive technologies, and secondary use research with clinical data. In 2016 she received a NZ Marsden Fast Start grant and a UOW Award for Best Emerging Researcher. She was President of the International Association of Bioethics (2016-2017) and is the ethics member of the Central Ethics Committee NZ. She has worked in schools of Medicine, Primary Healthcare and Philosophy in Australia, England and the United States; and as the Technical Officer for Genetics and Ethics at the World Health Organization in Geneva. In 2008 she was a Visiting Scholar at the Yale University Interdisciplinary Center for Bioethics.