Instrument for internal assessment of the quality of genetic counselling within a genetic counselling clinic

We invite all genetics clinics in Europe and elsewhere to use this instrument for self assessment of their work. Our recommendation is that the clinic staff does the evaluation together, documents the outcome and repeats the exercise for instance once a year to monitor the progress. Newly-established clinics may find the standards helpful also in estimating the need for resources.

This instrument was created by EuroGentest Unit 3 for self evaluation of the quality of the services at a genetics clinic, with special emphasis on genetic counselling. Defining adequate outcome measures compatible with the aims of genetic counselling turned out to be difficult. Thus the decision was to emphasize the process instead of the outcome. The instrument consists of a set of standards and measurable outcomes for genetic counselling, including items from waiting times and physical clinical environment to access to peer support and continuing professional education, supervision of junior staff, and the actual communication with counsellees. We believe that this instrument can be applied in self assessment across different systems of genetic healthcare.

The EuroGentest expert group involved in developing this instrument included Angus Clarke, Gerry Evers-Kiebooms, Andrew Faucett, Claire Julian-Reyner, Lauren Kerzin-Storrar, Heather Skirton, Aad Tibben, Marja Hietala, Ulf Kristoffersson, Irma Nippert, Elina Rantanen, Jorge Sequeiros, Joerg Schmidtke and Helena Kääriäinen. We are looking forward at your suggestions and any other feed back.

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