Article
European Journal of Human Genetics (2008) 16, 1208–1216; doi:10.1038/ejhg.2008.93; published online 14 May 2008
Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives
Elina Rantanen1, Marja Hietala1, Ulf Kristoffersson2, Irmgard Nippert3, Jörg Schmidtke4, Jorge Sequeiros5,6 and Helena Kääriäinen1,7
- 1Department of Medical Genetics, University of Turku, Turku, Finland
- 2Department of Clinical Genetics, University Hospital of Lund, Lund, Sweden
- 3Women's Health Research, Muenster Medical School, Muenster, Germany
- 4Institute of Human Genetics, Hannover Medical School, Hannover, Germany
- 5Instituto de Ciências Biomédicas de Abel Salazar, University of Porto, Porto, Portugal
- 6Instituto de Biologia Molecular e Celular, University of Porto, Porto, Portugal
- 7National Public Health Institute, Helsinki, Finland
Correspondence: E Rantanen, Department of Medical Genetics, University of Turku, Kiinamyllynkatu 10, Turku 20520, Finland. Tel: +358 2 333 7250; Fax: +358 2 333 7300; E-mail: elina.rantanen@utu.fi
Received 18 December 2007; Revised 7 April 2008; Accepted 9 April 2008; Published online 14 May 2008.
Abstract
The aim of this article is to review the national regulations and practices of genetic counselling in 38 European countries, and to examine how well they intersect the ideals of genetic counselling defined in international guidelines. Using an electronic survey, representatives of the National Societies of Human Genetics in 29 countries, and appropriate contact persons for the field of genetic counselling in 9 other countries, were asked about the regulations and practices. The answers showed that consent, confidentiality, genetic counselling in the context of prenatal diagnosis, those professionals who may perform genetic counselling, and non-directiveness were the topics most often either agreed upon among professionals or regulated in those countries. These are also among the key aspects of ideal genetic counselling, based on international guidelines. Counselling in the context of susceptibility testing for multifactorial diseases, counselling people from ethnic minorities and recontacting the counsellees, on the contrary, were topics regulated or guided by generally applied practices in only few countries. Many of the answers expressed a desire for more regulation of genetic counselling, and that more uniform practices of education and organization of genetic counselling would be welcome in Europe.
Keywords:
genetic testing, genetic counselling, national regulation, national practices
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