Abstract
The impact of genetic counseling (GC) was evaluated in families, who were interviewed at least two and half years and at most seven years after GC at the Genetics Service of the University Hospital, Faculty of Medicine of Ribeirão Preto, University of São Paulo (HC, FMRP, USP). The 113 families interviewed in this study were asked 48 questions and all children born after GC were studied clinically. We evaluated the families for spontaneous motivation for GC and understanding of GC information, their reproductive decisions, changes in the family after GC and the health status of new children. The majority of families seen at the Hospital das Clínicas de Ribeirão Preto were not spontaneously motivated to undergo GC. They had a low level of understanding about the information they received during GC. Generally families were using contraceptive methods (even when at low genetic risk) with a consequent low rate of pregnancies and children born after GC. These families also had a very low rate of child adoption and divorces when compared to other studies.
Highlights
In 1969, the Human Genetics Committee of the World Health Organization recommended that genetic counseling programs perform “genetic counseling follow-up investigations to determine the behavior of counselees” (WHO, 1969)
The data obtained in these studies help counselors improve the effectiveness of the genetic counseling that they provide for the community, and this new contact with counselees becomes a valuable complement of genetic counseling (GC) sessions (Abramovsky et al, 1980)
Others concerned a small group of diseases such as mucoviscidosis, phenylketonuria, Down syndrome (Leonard et al, 1972), and congenital heart disease (Reiss and Menashe, 1972), or more frequently, groups of different types of disease, since most GC services indiscriminately handle all types of genetic disease (Carter et al, 1971; Emery et al, 1973; Reynolds et al, 1974; Klein and Wyss, 1977; Briard et al, 1977; Abramovsky et al, 1980)
Summary
In 1969, the Human Genetics Committee of the World Health Organization recommended that genetic counseling programs perform “genetic counseling follow-up investigations to determine the behavior of counselees” (WHO, 1969). Shaw (1977) expressed concern about geneticists’ inadequacy in executing the operational phase of this work, since they are not trained in social or behavioral work. Some reviews (Shaw, 1977; Evers-Kiebooms and van den Berghe, 1979) have emphasized difficulties in comparing the data obtained due to methodological differences among the various services both in the form and the objectives of GC, as well as in the evaluation of results. She stated that evaluation, in order to be objective, should not be performed by the counselor himself
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