PERSONALISED MEDICINES SYMPOSIUM Warwick Medical School Medical Teaching Centre, Gibbet Hill Wednesday 5th July 2006 Prof. Vilhjálmur Árnason Department of Philosophy and Centre for Ethics University of Iceland Ethical Issues in Light of the Icelandic Experience In this paper I will discuss ethical issues relating to the research of DeCODE genetics in Iceland. The company has compiled the world’s most comprehensive collection of population data on genealogy, genotypes and phenotypes. This resource is used for identifying key genes related to common diseases and to the regulation of drug response. The aim is to develop tests that can predict individual drug response and thus contribute to effective personalized medicine. I will describe the database research resource that the company has been building up and focus on the questions of consent to participation in database research that have arisen in that context. I maintain that neither traditional informed consent nor an open blanket consent is desirable for this kind of research. The first is far too restrictive for the researchers and the second does not secure well enough the moral interests of the participants. I will argue that this issue does not amount to an option between furthering public or private interests because it is an important social benefit to preserve the dignatory interests of participants. I will describe an alternative type of consent which strikes a balance between the freedom of research and the protection of participants’ interests.