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

Rantanen, Elina; Hietala, Marja; Kristoffersson, Ulf LU ; Nippert, Irmgard; Schmidtke, Jorg; Sequeiros, Jorge and Kaariainen, Helena (2008) In European Journal of Human Genetics 16(10). p.1208-1216
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... (More)
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. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
practices, national, national regulation, genetic testing, genetic counselling
in
European Journal of Human Genetics
volume
16
issue
10
pages
1208 - 1216
publisher
Nature Publishing Group
external identifiers
  • wos:000259502200011
  • scopus:53249134468
ISSN
1476-5438
DOI
10.1038/ejhg.2008.93
language
English
LU publication?
yes
id
1f31c15b-a422-4167-a35c-37a942b1780e (old id 1286746)
date added to LUP
2009-01-29 15:38:06
date last changed
2017-03-05 03:28:37
@article{1f31c15b-a422-4167-a35c-37a942b1780e,
  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.},
  author       = {Rantanen, Elina and Hietala, Marja and Kristoffersson, Ulf and Nippert, Irmgard and Schmidtke, Jorg and Sequeiros, Jorge and Kaariainen, Helena},
  issn         = {1476-5438},
  keyword      = {practices,national,national regulation,genetic testing,genetic counselling},
  language     = {eng},
  number       = {10},
  pages        = {1208--1216},
  publisher    = {Nature Publishing Group},
  series       = {European Journal of Human Genetics},
  title        = {Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives},
  url          = {http://dx.doi.org/10.1038/ejhg.2008.93},
  volume       = {16},
  year         = {2008},
}