Objective: To explore lay perceptions about medicine and drug therapy (including gene-based therapy) in the present and in the future. Background: 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. Methods: 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. Participants: Forty-two persons participated in eight FGs in Iceland. The Icelandic moderator was interviewed in English after each group. Conclusions: 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.

Keywords:
Bioethics, Focus groups, Iceland, Lay public, Medicine, Risk, Social implications
1.
deCODE Genetics – homepage. www. decode.com (accessed May 1, 2001).
2.
Pálsson G, Rabinow P: The Icelandic genome debate. Trends Biotechnol 2001;19:166–171.
3.
Ólafsson S: Information policy disputes in Iceland. Intl Inform Libr Rev 2002;34:79–95.
4.
Pálsson G, Hardardóttir KE: For whom the cell tolls – debates about biomedicine. Curr Anthropol 2002;43:271–301.
5.
Gulcher J, Stefánsson K: The Icelandic Health Care Database and informed consent. N Engl J Med 2000;342:1827–1830.
6.
Sigurdsson S: Yin-yang genetics, or the HSD deCODE controversy. New Genet Soc 2001;20:103–117.
7.
Pálsson G, Rabinow P: Iceland the case of a National Human Genome Project. Anthropol Today 1999;15:14–18.
8.
Rose H: The Comodification of Bioinformation: The Icelandic Health Sector Database. London, Wellcome Trust, 2001.
9.
Winickoff DE: Rhetoric equals cash in Iceland: the bio banks law and deCODE Genetics. GeneWatch 2000;13:4–6.
10.
Pálsson G, Rabinow P: ‘The Iceland controversy: reflections on the transnational market of civic virtue; in Ong A, Collier SJ (eds): Global Assemblages. Technology, Politics, and Ethics as Anthropological Problems. Oxford, Blackwell, 2005, pp 91–103.
11.
Gabe J: Medicine, Health and Risk – Sociological Approaches. Oxford, Blackwell, 1995.
12.
Abraham J, Sheppard J: Democracy, technocracy, and the secret state of medicines control: expert and nonexpert perspectives. Sci Technol Human Values 1997;22:139–167.
13.
Almarsdóttir AB, Morgall JM, Björnsdóttir I: A question of emphasis: efficiency or equality in the provision of pharmaceuticals. Int J Health Plann Manage 2000;15:149–161.
14.
Traulsen JM, Almarsdóttir AB, Björnsdóttir I: The lay user perspective on the quality of pharmaceuticals, drug therapy and pharmacy services – results of focus group discussions. Pharm World Sci 2002;24:196–200.
15.
Møldrup C, Morgall JM, Almarsdóttir AB: Perceived risk of future drugs – a Danish citizen Delphi. Health Risk Soc 2002;4:5–17.
16.
Traulsen JM, Almarsdóttir AB, Björnsdóttir I: Interviewing the moderator: an ancillary method to focus groups. Qual Health Res 2004;14:714–725.
17.
Gunnlaugsson GÀ: Population and migration patterns 1880–1990; in Hálfdanarson G, Kristjánsson S (eds): Icelandic Societal Development 1880–1990: Essays (in Icelandic). Reykjavík, University of Iceland Social Science Research Institute, 1993, p 109.
18.
Christensen BM, Gunnlaugsson HP: Qualitative Analysis in Windows (in Danish). http://www.phys.au.dk/~hpg/Manual1.doc (accessed May 2, 2001).
19.
Malterud K: Qualitative Methods in Medical Research. An Introduction (in Norwegian). Oslo, Tano Aschehoug, 1996.
20.
Wynne B: May the sheep graze? A reflexive view of the expert-lay knowledge divide; in Lash S, Szerszynski B, Wynne B (eds): Risk, Environment and Modernity. Towards a New Ecology. London, Sage, 1996, pp 44–83.
21.
Slovic P: Perception of risk. Science 1987;236:280–285.
22.
Zwick M: Genetic engineering: risks and hazards as perceived by the German public. New Genet Soc 2000;19:269–281.
23.
Møldrup C, Morgall JM: Risk society reconsidered in a drug context – the emergence of medically enhanced normality. Health Risk Soc 2001;3:59–74.
24.
Everett M: The social life of genes: privacy, property and the new genetics. Soc Sci Med 2003;56:53–65.
25.
Almarsdóttir AB, Björnsdóttir I, Traulsen JM: A lay prescription for tailor-made drugs – focus group reflections on pharmacogenomics. Health Policy 2005;71:233–241.
26.
Almarsdóttir AB, Traulsen JM, Björnsdóttir I: We don’t have that many secrets ‘– the lay perspective on privacy and genetic data; in Árnason G, Nordal S, Árnason V (eds): Blood and Data – Ethical, Legal and Social Aspects of Human Genetic Databases. Reykjavík, University of Iceland, 2004, chap 22.
27.
Korts K, Weldon S, Gudmundsdóttir ML: Genetic databases and public attitudes: a comparison of Iceland, Estonia and the UK. TRAMES 2004;8:131–149.
28.
Winickoff DE: Genome and National Iceland’s Health Sector Database and its legacy. Innovations 2006, pp 80–105.
29.
Pálsson G: The rise and fall of a biobank: the case of Iceland; in Gottweis H, Petersen A (eds): Monitoring Bodies. London, Routledge, in press.
© 2008 S. Karger AG, Basel
2008
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.