Genetic testing as part of health care (Unit 2)

General Information

Aims

Our aim is to improve the quality of genetic counselling services across Europe, and establish recommendations and minimal criteria for different testing situations and training of health care personnel. Also, we aim to encourage and harmonize the practice of informed consent.

Another aim is to define clinical validity and utility of genetic testing by investigating genetic services across European countries and evaluating their impact on public health policies and economics. Given limited resources, criteria and mechanisms to maximise the output of genetic services will be investigated in order to present recommendations and guidelines for clinical validation.

Genetic counselling

Recommendations for genetic counselling (final version)
Summary of the International Guidelines for Genetic Counselling (May 2006)
Have patients' opinions been asked?
A review of 102 studies from the years 1997- 2007 on patient perspective of genetic counselling services in genetic testing
Instrument for quality self-assessment in provision of genetic counselling
Instrument for internal assessment of the quality of genetic counselling within a genetic counselling clinic. The aim is to support internal education, improve the quality and to start the process of documenting issues related to quality development in genetic counselling clinics.

Definitions of Genetic Testing

Definitions of Genetic testing in European and other legal documents
Definitions of Genetic testing in European and other legal documents (html version)
Objectives
Questionniare for Project Partners (Released: 28th February 2007)

Clinical validity and utility

Clinical utility gene cards
Unit3 of EUROGENTEST1 has developed "points to consider" regarding clinical indications for genetic testing and is inviting for commentaries from the scientific community.
Clinical validity and utility of genetic testing – the viewpoint of a clinical geneticist. (WP3.2 - Released: 18th November 2005)
An opinion paper written by Jörg Schmidtke, Hannover Medical School.

Regulations and practices

Regulation and practices related to genetic counselling in 38 European countries (WP3.1 - Released: 20th December 2006) ( Pdf ) Results of survey performed among National Societies of Human Genetics and contact persons in Europe
National Regulation of Genetic Counselling (WP3.1 - Released: January 2008) The following list presents only laws and governmental orders, if they contain an explicit provision on genetic counselling. The relevant laws and governmental orders are found at the governmental websites.