1. ¹Department of Medical Genetics, University of Turku, Turku, Finland
2. ²Department of Clinical Genetics, University Hospital of Lund, Lund, Sweden
3. ³Women's Health Research, Muenster Medical School, Muenster, Germany
4. ⁴Institute of Human Genetics, Hannover Medical School, Hannover, Germany
5. ⁵ICBAS and IBMC, University of Porto, Porto, Portugal
6. ⁶National 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 23 May 2007; Revised 31 October 2007; Accepted 15 November 2007; Published online 16 January 2008.

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.