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What is ideal genetic counselling? A survey of current international guidelines

Rantanen, Elina; Hietala, Marja; Kristoffersson, Ulf LU ; Nippert, Irmgard; Schmidtke, Joerg; Sequeiros, Jorge and Kaariainen, Helena (2008) In European Journal of Human Genetics 16(4). p.445-452
Abstract
The objective of this article is to review guidelines that address counselling in the context of genetic testing in order to summarise what aspects of counselling they consider most important, and to examine how they construct the ideal of genetic counselling. Guidelines were collected by examining the websites of different international professional, political, ethical and patient organisations, either previously known or found with the help of the Google search engine, and also using references listed in other studies. The most frequently mentioned topics in the collected 56 guidelines were sought, and this was carried out with the software package Qualitative Solutions and Research for Non-numerical Unstructured Data Indexing Searching... (More)
The objective of this article is to review guidelines that address counselling in the context of genetic testing in order to summarise what aspects of counselling they consider most important, and to examine how they construct the ideal of genetic counselling. Guidelines were collected by examining the websites of different international professional, political, ethical and patient organisations, either previously known or found with the help of the Google search engine, and also using references listed in other studies. The most frequently mentioned topics in the collected 56 guidelines were sought, and this was carried out with the software package Qualitative Solutions and Research for Non-numerical Unstructured Data Indexing Searching and Theorizing. Topics related to genetic counselling that were mentioned in at least 30 of 56 collected documents were considered to be the most important aspects of genetic counselling. The ideal of genetic counselling is expressed in the analysed guidelines as being composed of (1) an appropriately trained professional who understands genetics and its ethical implications well; (2) relevant and objective information; (3) assurance of the counsellee's understanding; (4) psychological support; (5) informed consent; (6) confidentiality of genetic information; (7) considering familial implications; (8) appropriate handling of potential discrimination of testing; and (9) assuring autonomous decision-making by the counsellee. The ideal of genetic counselling is rather consistent in the guidelines, but there are some contradictions between the requirements of objective information-giving and adapting counselling to counsellee's circumstances. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
guidelines, genetic counselling, genetic testing
in
European Journal of Human Genetics
volume
16
issue
4
pages
445 - 452
publisher
Nature Publishing Group
external identifiers
  • wos:000254134700006
  • scopus:41049085395
ISSN
1476-5438
DOI
10.1038/sj.ejhg.5201983
language
English
LU publication?
yes
id
76c9987f-3ae7-4572-8042-c8551ebe63ba (old id 1185073)
date added to LUP
2008-09-02 15:45:06
date last changed
2017-11-19 03:30:15
@article{76c9987f-3ae7-4572-8042-c8551ebe63ba,
  abstract     = {The objective of this article is to review guidelines that address counselling in the context of genetic testing in order to summarise what aspects of counselling they consider most important, and to examine how they construct the ideal of genetic counselling. Guidelines were collected by examining the websites of different international professional, political, ethical and patient organisations, either previously known or found with the help of the Google search engine, and also using references listed in other studies. The most frequently mentioned topics in the collected 56 guidelines were sought, and this was carried out with the software package Qualitative Solutions and Research for Non-numerical Unstructured Data Indexing Searching and Theorizing. Topics related to genetic counselling that were mentioned in at least 30 of 56 collected documents were considered to be the most important aspects of genetic counselling. The ideal of genetic counselling is expressed in the analysed guidelines as being composed of (1) an appropriately trained professional who understands genetics and its ethical implications well; (2) relevant and objective information; (3) assurance of the counsellee's understanding; (4) psychological support; (5) informed consent; (6) confidentiality of genetic information; (7) considering familial implications; (8) appropriate handling of potential discrimination of testing; and (9) assuring autonomous decision-making by the counsellee. The ideal of genetic counselling is rather consistent in the guidelines, but there are some contradictions between the requirements of objective information-giving and adapting counselling to counsellee's circumstances.},
  author       = {Rantanen, Elina and Hietala, Marja and Kristoffersson, Ulf and Nippert, Irmgard and Schmidtke, Joerg and Sequeiros, Jorge and Kaariainen, Helena},
  issn         = {1476-5438},
  keyword      = {guidelines,genetic counselling,genetic testing},
  language     = {eng},
  number       = {4},
  pages        = {445--452},
  publisher    = {Nature Publishing Group},
  series       = {European Journal of Human Genetics},
  title        = {What is ideal genetic counselling? A survey of current international guidelines},
  url          = {http://dx.doi.org/10.1038/sj.ejhg.5201983},
  volume       = {16},
  year         = {2008},
}