Informed democratic consent? The case of the Icelandic Database

Vilhjálmur Árnason, Gardar Árnason

University of Iceland

Abstract. The rapid rise of genetics and the unprecedented tensions between public and commercial interests in this type of scientific research create new problems and magnify old ones concerning the role of government in defending public interests and the efficacy of democratic procedures in securing such ethical requirements as privacy and confidentiality of medical records and genetic material. The question of democratic consent will be of particular interest: We argue that the debate about the Health Sector Database (HSD) in Iceland does not exemplify well the democratic community consent, and that the procedure through which the HSD was made possible was seriously flawed. Informed democratic consent has to meet both procedural and substantive criteria. We argue that it would fail on both accounts because the free, reasoned and informed public dialogue which is a necessary condition for such consent never took place.