Ethical Issues Associated with Managing and Sharing Individual-Level Health Data

Abstract

AbstractThe COVID-19 pandemic has resulted in the generation of an unprecedented and exponentially mounting volume of data, including individual-level health data, bringing into sharp focus the importance of thinking about what constitutes ethical use of data in a public health emergency. The timely and appropriate use of such data (e.g. data from public health surveillance, electronic health records and research projects) has great potential to contribute to successful public health policies, effective therapeutic interventions and enhanced public support for, and trust in, governmental responses to the pandemic. However, a number of ethical issues arise from the use of different kinds of data, and the ways in which they are collected, processed and shared in the context of research during a pandemic. Two broad principles are generally associated with managing and sharing health data in research: first, that researchers should ensure research is carried out in a way that is respectful of persons and communities; and second, that the research is carried out in a manner that is fair to stakeholders, i.e. that it promotes equity. These should also remain the foundational principles of data sharing during a public health emergency. The principle of respect for persons and communities requires careful attention to be paid to consent processes for data sharing, justifications for waiving consent and approaches to protecting privacy and confidentiality. The promotion of equity prompts consideration of how the needs of differing stakeholders in data sharing are recognised and balanced, including appropriate forms of recognition for data sharers, and fair benefit sharing with the individuals and communities data have been collected from. The cases in this chapter illustrate issues arising when populations contribute data to a symptom-checker app, when heightened concerns arise raised about privacy and confidentiality in the context of collecting data about individuals who are potentially easily identifiable by their demographic characteristics, when very sensitive data is collected, and when a waiver of consent to access survey data is requested to enable potential participants of a study to be identified and contacted.