'I'm Happy if I Can Help'. Public views on future medicines and gene-based therapy in Iceland

To explore lay perceptions about medicine and drug therapy (including gene-based therapy) in the present and in the future.

Following almost a year of national debate, the Icelandic parliament passed the Health Sector Database (HSD) Act in 1998. No single issue has been as much debated in Iceland as this database. Despite the explosion of popular and scientific literature in the field of bioethics, there is still a paucity of research concerning 'lay' contributions to the debates.

The study was designed as a qualitative study. Focus groups (FGs) were conducted followed by one-on-one interviews with the FG moderator. PARTICIPANTS were asked to comment on a future scenario consisting of predictions concerning the consequence of the Human Genome Project over the next 40 years.

Forty-two persons participated in eight FGs in Iceland. The Icelandic moderator was interviewed in English after each group.

The lay public was relatively optimistic with regard to the future of drugs and gene-based therapy. Reasons for this optimism can be found in a basic trust and belief in the welfare state and the health system. These results are not consistent with studies carried out in other countries where the public appears to be focused on the negative effects of genetic research and the threats to privacy. Most participants expressed concern about potential problems with regard to social and equity issues, whereas the HSD controversy, a discourse based on the rhetoric of bioethics, was at variance with the issues focused on by the lay public.