UNCERTAINTY IN THE INFORMATION PROVIDED DURING GENETIC-COUNSELING

Clients seek genetic counseling in order to become informed, to make b etter decisions, and, if possible, to be reassured. Genetic knowledge, however, is fragmentary and incomplete and therefore it may involve m ore uncertainty than is desirable. In a cohort of 30 counseling sessio ns we studied the genetic information that was actually conveyed in te rms of its predictability, controllability and novelty. With regard to predictability it emerged to be rather the rule than the exception th at clients of genetic counseling were confronted with (I) an inconclus ive diagnosis, (2) the chance or an estimate of the chance of the occu rrence or recurrence of a genetic disorder, and (3) ambiguity about th e severity of the disease. In case of bad news, possibilities for cont rol (therapeutic or preventive measures) were minimal. In a few cases, clients were confronted with completely unexpected findings, i.e., in formation of high novelty. It is concluded that the high degree of unc ertainty in the information provided during genetic counseling - refle cting the true state of the art - is in direct contrast to the needs o f clients. (C) 1997 Elsevier Science Ireland Ltd.