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

Research output: Contribution to journalArticle

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.

Details

Authors
  • Elina Rantanen
  • Marja Hietala
  • Ulf Kristoffersson
  • Irmgard Nippert
  • Joerg Schmidtke
  • Jorge Sequeiros
  • Helena Kaariainen
Organisations
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Medical Genetics

Keywords

  • guidelines, genetic counselling, genetic testing
Original languageEnglish
Pages (from-to)445-452
JournalEuropean Journal of Human Genetics
Volume16
Issue number4
Publication statusPublished - 2008
Publication categoryResearch
Peer-reviewedYes