Consumer Medicine Edited by Aaro Tupasela TemaNord 2010:530 Consumer Medicine TemaNord 2010:530 © Nordic Council of Ministers, Copenhagen 2010 ISBN 978-92-893-2038-2 Print: Kailow Express ApS Copies: 200 Printed on environmentally friendly paper This publication can be ordered on www.norden.org/order. Other Nordic publications are avail- able at www.norden.org/publications Printed in Denmark Nordic Council of Ministers Nordic Council Store Strandstræde 18 Store Strandstræde 18 DK-1255 Copenhagen K DK-1255 Copenhagen K Phone (+45) 3396 0200 Phone (+45) 3396 0400 Fax (+45) 3396 0202 Fax (+45) 3311 1870 www.norden.org Nordic co-operation Nordic cooperation is one of the world’s most extensive forms of regional collaboration, involv- ing Denmark, Finland, Iceland, Norway, Sweden, and three autonomous areas: the Faroe Islands, Greenland, and Åland. Nordic cooperation has firm traditions in politics, the economy, and culture. It plays an important role in European and international collaboration, and aims at creating a strong Nordic community in a strong Europe. Nordic cooperation seeks to safeguard Nordic and regional interests and principles in the global community. Common Nordic values help the region solidify its position as one of the world’s most innovative and competitive. Content Foreword................................................................................................................................. 9 Forord.................................................................................................................................... 11 Introduction: Consumer Medicine – From Passive Patients to Active Consumers Aaro Tupasela,...................................................................................................................... 13 Consumers and the market for health................................................................... 14 Biotechnology policy and healthcare ................................................................... 17 Patient expectations/political expectations........................................................... 19 From genetic self-testing to “medical tourism”.................................................... 20 References............................................................................................................ 23 Part 1: Genetic self-testing................................................................................................... 25 1. The Sale of Genetic Information: Ethical Aspects of Genetic Analysis Ástríður Stefánsdóttir,........................................................................................................... 27 1.1. First concern: Uncertain result ...................................................................... 29 1.2. Second concern: Health information? ........................................................... 32 1.3. Third concern: Effect on the health system................................................... 34 1.4. Fourth concern: Gaining health information without health professionals.... 35 References............................................................................................................ 38 2. Personal Genomics: Consumer Genomics Companies and their Rhetoric Anders Nordgren,.................................................................................................................. 39 2.1. Introduction................................................................................................... 39 2.2. Genetic services ............................................................................................ 39 2.3. Rhetoric......................................................................................................... 40 2.4. The appeal to personal identity ..................................................................... 41 2.5. The appeal to personal empowerment........................................................... 43 2.6. Criticism of the two appeals.......................................................................... 45 2.7. The need for regulation ................................................................................. 47 Conclusion ........................................................................................................... 50 References............................................................................................................ 50 3. Me, My Genes and Us – Personal Experiences With Gene Tests, and Some Sociological Observations Robin Engelhardt,..................................................................................................................53 3.1. Introduction................................................................................................... 53 3.2. Ordering and understanding a genetic test .................................................... 54 3.3. Where the difficulties start............................................................................ 55 3.4. What will other people do with this information?......................................... 57 3.5. Social concerns ............................................................................................. 58 Conclusion ........................................................................................................... 60 References............................................................................................................ 61 4. The Work of the UK’s Human Genetics Commission on Genetic Tests Sold Direct to the Public. Frances Flinter,.....................................................................................................................63 4.1. Introduction................................................................................................... 63 4.2. Human Genetics Commission....................................................................... 63 Annex A............................................................................................................... 69 References............................................................................................................ 70 Part 2: Gross-border medical treatment ................................................................................71 5. Justice in Health Care and Medical Tourism – Should Private Money Talk? Niklas Juth, ............................................................................................................................73 5.1. Introduction................................................................................................... 73 5.2. Principles of justice....................................................................................... 74 5.3. Justice in health care ..................................................................................... 77 5.4. Three problems of justice with medical tourism ........................................... 81 References............................................................................................................ 82 6. Medical Tourism – A Contradiction in Terms Villy O. Christensen,..............................................................................................................85 6.1. Introduction................................................................................................... 85 6.2. Patient mobility within the EU...................................................................... 86 6.3. Common Market – Common Approval of Treatment ................................... 86 6.4. Inadequate doctors ........................................................................................ 87 6.5. Politics and money leaves no room for the patient........................................ 87 6.6. Who, why and when?.................................................................................... 88 6.7. The new breed of patients ............................................................................. 89 6.8. The Internet a potential hazard to health....................................................... 89 6.9. Specialized hospitals..................................................................................... 90 6.10. Information desperately needed .................................................................. 91 6.11. The system vs. the patient ........................................................................... 92 6.12. Patients are participants in a game of Monopoly......................................... 92 6.13. When money talks....................................................................................... 94 6.14. Urgent changes needed ............................................................................... 95 6.15. United we stand........................................................................................... 96 References............................................................................................................ 97 7. The State and the Infertile Patient Looking for Treatment Abroad: a Difficult Relationship Guido Pennings and Heidi Mertes, ...................................................................................... 99 7.1. Introduction................................................................................................... 99 7.2. Reasons for travelling abroad...................................................................... 100 7.3. Legal problems............................................................................................ 101 7.4. Attitude of the