Iceland

In December 1998 the Icelandic Parliament passed a bill authorizing the construction of the Health Sector Database (HSD). The objective of the Act was to ‘authorise the creation and operation of a centralised database of non-personally identifiable health data with the aim of increasing knowledge in order to improve health and health services’.

The passing of the Act led to much debate concerning the unique position in Iceland with regard to genetic research. This position was, among other things, due to carefully registered health information over a long period, a homogeneous society and the willingness of the Icelandic public to participate in research. During this period there was a high level of media attention by the national and international press. Opinion polls showed that the majority of the public supported the HSD. In 1998 a Gallup poll concluded that 58% of Icelanders supported the database, 19% were opposed and 22% were neither for nor against. In 2000 another Gallup poll concluded that the overwhelming majority of the public (81%) supported the database, whilst only 9% were opposed and 10% were neither for nor against. The planned database has been a subject for debate and discussion from the outset. Some of the discussions focused on the exclusive licensing agreement with a multinational company authorized by the Icelandic Parliament. In Iceland therefore, discussion about genetic research has mostly been in connection with the HSD and the form of the Act.