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Attitude towards pre-implantation genetic diagnosis for hereditary cancer
Authors:Chantal Lammens  Eveline Bleiker  Neil Aaronson  Annette Vriends  Margreet Ausems  Maaike Jansweijer  Anja Wagner  Rolf Sijmons  Ans van den Ouweland  Rob van der Luijt  Liesbeth Spruijt  Encarna Gómez García  Mariëlle Ruijs  Senno Verhoef
Institution:1. Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital (NKI-AVL), Amsterdam, The Netherlands
2. Division of Psychosocial Research & Epidemiology/Family Cancer Clinic, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital (NKI-AVL), Amsterdam, The Netherlands
3. Department of Human and Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands
4. Department of Medical Genetics, University Medical Centre Utrecht, Utrecht, The Netherlands
5. Department of Paediatric Genetics, Emma Children’s Hospital/Academic Medical Centre, Amsterdam, The Netherlands
6. Department of Clinical Genetics, Erasmus Medical Centre, Rotterdam, The Netherlands
7. Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
8. Department of Clinical Genetics, University Medical Centre Nijmegen, Nijmegen, The Netherlands
9. Department of Clinical Genetics, Academic Hospital Maastricht, Maastricht, The Netherlands
10. Department of Clinical Genetics, VU University Medical Centre, Amsterdam, The Netherlands
11. Family Cancer Clinic, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital (NKI-AVL), Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands
Abstract:The use of pre-implantation genetic diagnosis (PGD) for hereditary cancer is subject to on-going debate, particularly among professionals. This study evaluates the attitude towards PGD and attitude-associated characteristics of those concerned: family members with a hereditary cancer predisposition. Forty-eight Von Hippel-Lindau and 18 Li–Fraumeni Syndrome families were identified via the 9 family cancer clinics in the Netherlands. In total, 216 high risk family members and partners were approached, of whom 179 (83%) completed a self-report questionnaire. Of the high risk family members, 35% expressed a positive attitude towards PGD. Those with a current desire to have children were significantly more likely to have a positive attitude: 48% would consider the use of PGD. No other sociodemographic, medical or psychosocial variables were associated significantly with a positive attitude. The most frequently reported advantage of PGD is the avoidance of a possible pregnancy termination. Uncertainty about late effects was the most frequently reported disadvantage. These results indicate that approximately half of those contemplating a future pregnancy would consider the use of PGD. The actual uptake, however, is expected to be lower. There is no indication that psychosocial factors affect interest in PGD.
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