Ethics and Equity: Transforming data sharing in infectious disease epidemics
This project aims to develop urgently-needed ethical guidance on how data can be equitably shared in infectious disease epidemics and pandemics. Since the advent of the COVID-19 pandemic, there has been an explosion of health data, both epidemiological and research-related. Funders, journals, researchers, WHO, and others are strongly pushing for open and rapid sharing of COVID-19-related data. The importance of data sharing has been recognised during prior infectious disease epidemics like Zika and Ebola and more generally. Previously, 17 research funders from across the world jointly affirmed the need to increase the availability of research data in ways that are equitable, ethical, and efficient in a Joint Statement of Purpose. Yet despite this growing consensus, a key challenge to implementing policies and processes for equitable data sharing has been the lack of a robust understanding of what equitable sharing is. In other areas of research ethics, issues relating to justice and fairness have been comprehensively addressed and incorporated into policy and guidance. This project explores what comprises fairness and justice in data sharing during infectious disease epidemics and pandemics. As a first step to investigate that question, literature on data sharing in infectious disease epidemics and pandemics will be systematically gathered. It will then be thematically analysed for ethical dimensions (values, norms, ethical concerns, dilemmas and tensions, responsibilities), with a particular focus on fairness and justice. Guidance on how to address concerns and navigate tensions between values that relate to fairness and justice when sharing data during epidemics and pandemics will then be developed.
Susan Bull (Ethox Centre, Oxford University)
University of Melbourne
R Douglas Wright Research Fellowship