Reproductive plans of genetic counseling clients not eligible for prenatal diagnosis

Abstract

A prospective study of the reproductive plans of 185 genetic counseling clients at risk for birth defects not diagnosable prenatally found, 6 months after counseling, 1) a small increase in the number of pregnancies initiated and planned, compared to pregnancies planned before counseling; 2) an increase in initiated and planned pregnancies among clients at both high as well as low risk; and 3) reproductive plans after counseling more closely correlated with clients' perceptions of the social, familial, and economic burdens of an affected child than with medically defined risk and specific clinical characteristics of the birth defects. In discussing the burden of a birth defect with clients, counselors are encouraged to discuss not only the medical burden, but the social, familial, and financial burdens as well.

Public Perception of Prenatal Genetic Testing: Arguments Put forward by the Public during a Participatory Policy Project in the Netherlands

“…Other studies, such as those by Ash [19], Stern et al [16], Sorenson et al [20] and Wertz et al [9], come to the same conclusion.…”

Genetic counseling for childless women at risk for Duchenne muscular dystrophy

“…This is also true for women with good comprehension and retention of the information given to them during counseling. These apparent contradictions were also observed by us [Eggers and Zatz, 1998] in a study on the effects of genetic counseling for adult males affected with progressive muscular dystrophies (who had different recurrence risks for their offspring) as well as by other authors for different genetic diseases [Evers-Kiebooms and van der Berghe, 1979;Frets et al, 1990a;Frets et al, 1990b;Sorenson et al, 1987;Sorenson et al, 1981]. The lack of association between the magnitude of the genetic risk and the reproductive outcome after genetic counseling could be due to differences in the risk perception and complex decision processes prior to reproduction unconscious to a great extent [Frets et al, 1991;Kessler, 1989].…”

“…Different from that or other reports [for example, Sissine et al, 1981;Sorenson et al, 1987;Swerts, 1987 Wertz andSorenson, 1986;Wertz et al, 1984], the present study only includes women childless before genetic counseling. This design was chosen to ensure that past reactions toward pregnancy and the birth of affected or normal children would not interfere with family planning.…”

“…On the other hand, seeking advice about reproduction is frequently observed even among well-informed counselees and often leads to problems related to the issue of nondirectiveness during genetic counseling [Kessler, 1992[Kessler, , 1997. Specifically concerning reproductive outcome after genetic counseling, some investigators report that genetic risk estimates have influenced family planning [Abramovsky et al, 1980; Evers-Kiebooms and van der Berghe, 1979], whereas others report that the past reproductive history has been more important than the genetic risk [Eggers and Zatz, 1998;Sissine et al, 1981;Sorenson et al, 1987;Swerts 1989;Wertz and Sorenson, 1986]. Another perspective on this issue was given by Wertz et al [1984] where uncertainties concerning issues such as the ideal family size as well as the effects of caring for affected children reported before genetic counseling were considered to be good predictors for reproductive uncertainty after genetic counseling.…”

“…Most articles concerning reproductive decisions after genetic counseling assess clients who already have had children, affected or not, prior to counseling [Eggers and Zatz, 1998;Sissine et al, 1981;Sorenson et al, 1987;Swerts 1989;Wertz and Sorenson, 1986;Wertz et al, 1984] and most of them include many different diseases in their cohorts. In the present investigation we analyzed the understanding of genetic counseling and the reproductive outcomes of 263 women childless before genetic counseling who were at risk for Duchenne muscular dystrophy (DMD).…”