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Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives

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Author

  • Elina Rantanen
  • Marja Hietala
  • Ulf Kristoffersson
  • Irmgard Nippert
  • Jorg Schmidtke
  • Jorge Sequeiros
  • Helena Kaariainen

Summary, in English

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.

Publishing year

2008

Language

English

Pages

1208-1216

Publication/Series

European Journal of Human Genetics

Volume

16

Issue

10

Document type

Journal article

Publisher

Nature Publishing Group

Topic

  • Medical Genetics

Keywords

  • practices
  • national
  • national regulation
  • genetic testing
  • genetic counselling

Status

Published

ISBN/ISSN/Other

  • ISSN: 1476-5438