Uncertainty in the information provided during genetic counseling

Abstract

Clients seek genetic counseling in order to become informed, to make better decisions, and, if possible, to be reassured. Genetic knowledge, however, is fragmentary and incomplete and therefore it may involve more uncertainty than is desirable. In a cohort of 30 counseling sessions we studied the genetic information that was actually conveyed in terms of its predictability, controllability and novelty. With regard to predictability it emerged to be rather the rule than the exception that clients of genetic counseling were confronted with (1) an inconclusive diagnosis, (2) the chance or an estimate of the chance of the occurrence or recurrence of a genetic disorder, and (3) ambiguity about the severity of the disease. In case of bad news, possibilities for control (therapeutic or preventive measures) were minimal. In a few cases, clients were confronted with completely unexpected findings, i.e., information of high novelty. It is concluded that the high degree of uncertainty in the information provided during genetic counseling--reflecting the true state of the art--is in direct contrast to the needs of clients.