GENETIC COUNSELLING AND RISK PERCEPTION

Albrecht M¹. Pelz J², Kunze J², Versmold H¹

¹ Department of Paediatrics, Freie Universität Berlin, Universitätsklinikum Benjamin Franklin, Berlin, Germany; ² Department for Human Genetics, Charité, Campus Virchow-Klinikum, Berlin, Germany

OBJECTIVE: Risk figures for the occurrence of a genetic disease are widely used in genetic counselling, especially in counsellee's who seek advice for their reproductive future. Since the genetic counsellor provides the risk figures in order to ease the counsellee's decision making, it is of major importance to understand the counsellee's perception and valuation of these risk figures.

METHODS: During a period of one year 124 counsellee's were visited at home five to seven weeks after their counselling session. In a structured interview they were asked about the essence of their counselling session. One section of this interview was devoted to the knowledge and the assessment of the provided genetic risk. The answers were compared to protocols of the genetic counsellors.

Results: 78% of the counsellee's were able to recall their diagnosis and their genetic risk correctly. 6% could not recall either of these. Of those who found the genetic risk an important factor in their reproductive decision, only 75% were able to recall their risk. Although there was no difference between the sexes in recalling the risk figures, there was a difference in the assessment of the provided risk. Women tended to accept a higher risk figure than men. 77% of the counsellee's could imagine to interrupt a pregnancy on account of risk figures provided in a genetic counselling session.

CONCLUSIONS: The results of our study show that the counsellees over all ability to recall facts provided in counselling sessions is good. However, there is a big difference in the personal meaning of the provided information. Great emphasis has to be put on the personal differences in risk perception between individuals.