Moral Interests, Privacy and Medical Research

Abstract

This chapter examines the relationship between the values of research and privacy in the context of medical research on patient data. An analytical framework is developed by interpreting the conception of privacy advanced in the jurisprudence of the European Court of Human Rights by reference to the Principle of Generic Consistency, seminally argued to be the supreme principle of morality by Alan Gewirth. This framework is used to uncloak the inequity of positions uncompromisingly prioritising research values over privacy values or vice versa—research worship and consent worship, respectively. We then apply this framework to three hypothetical studies to show how apparent conflicts between research and privacy values can be resolved