Public health is about taking collective action to protect and promote the health of populations. For example, vaccination and screening programmes help avoid or ameliorate diseases; health education and promotion help make people healthier. Public health is underpinned by research, including epidemiology. Public health research is enormously beneficial but also creates ethical issues. Some are familiar from standard research ethics, but with a public health ‘twist’. For example, what sort of informed consent is required when research involves large data sets used by epidemiologists? Other issues are distinctive to public health research: should ethical restrictions on research be lifted during public health emergencies, for example? This book analyses current ethical issues in public health research. Rigorous discussions are informed by insights from standard research ethics, from philosophy and bioethics, and from the author’s related research and experience as Chair of Public Health England’s Research Governance Review Group. An overarching theme of the book is the trade-off between one’s right to decide to participate in public health research versus the communal duty to do so.
Chapter 1 – Public Health Information and the Research-Practice Distinction
Chapter 2 – Governance, Research Exceptionalism and Proportionate Review
Chapter 3 – Privacy
Chapter 4 – Anonymity and Re-Identification
Chapter 5 – Identifiable Data
Chapter 6 – Consent
Chapter 7 – Trust and Trustworthiness
Stephen Holland is Reader in Philosophy and Health Science at the University of York. He is the author of Public Health Ethics (2nd edn. 2014) and Chair of Public Health England’s Research Governance Review Group.
This is a fascinating book on a timely topic. Holland provides a deft philosophical guide to a wide range of complex issues in the collection, storage and use of public health data. His overarching argument, that concerns about informational privacy have gone too far, is well-developed; researchers, regulators and ethicists should all reflect on it.