Reproductive attitudes of couples having a child with cystic fibrosis in Brittany (France)

Abstract

Cystic fibrosis (CF) has an incidence of one in 2,636 livebirths and a carrier rate of one in 26 inhabitants in Brittany. One objective of a major enquiry among parents having a CF child as well as CF adolescents and adults was to evaluate the reproductive behavior of 124 couples attending a CF care center. Knowledge of recurrence risk resulted in deciding against further progeny or in reducing the number of children (average number of children: 1.96; ideal mean number of children: 3.7). Thirty-five percent adopted or changed their method of contraception after the birth of their affected child, but the change was due to the birth of the CF child in only 14.3% of the couples. Prenatal diagnosis (PD) was favored by 95.1%, and 41.2% had used it; 68.6% were in favor of pregnancy interruption for CF and 76.2% would interrupt the pregnancy should PD reveal that their fetus had CF. All 123 respondents thought that genetic counseling was useful, but only 87.1% knew of its availability. Our results are quite different from those previously published. Although results could be population-specific, one cannot exclude the fact that they reflect a change of attitudes among parents, the other studies being much older.

Cystic fibrosis and the family: A review and critique of the literature.

“…Another issue linked to sexual intimacy for these couples is whether to have another child. De Braekeleer et al (1994) found that couples with a child with CF, who had correct knowledge about the genetic transmission of CF, did not plan on having subsequent pregnancies. The authors suggest that having a child with CF affects future reproductive plans and may decrease sexual intimacy.…”

Prenatal diagnosis of inherited diseases: 20 years’ experience of an Italian Regional Reference Centre

“…This analysis enables high-risk couples to make an informed reproductive decision [2]. PD for inherited diseases is currently performed by analysing DNA from foetal cells obtained by chorionic villi (CV) sampling or on samples obtained by amniocentesis.…”

Shock, Adjust, Decide: Reproductive Decision Making in Cystic Fibrosis (CF) Carrier Couples—A Qualitative Study

“…Facilitating reproductive decision making in CF is an important aspect of reproductive genetic counseling practice. The reproductive choices made in situations of genetic risk, particularly those made by CF carrier couples, are well documented (Boue et al 1991;Cunningham and Marshall 1998;De Braekeleer et al 2000;De Braekeleer et al 2004;Dudding et al 2000;Evers-Kiebooms et al 1988;Frets et al 1990a, b;Henneman et al 2001;Henneman et al 2002;Mischler et al 1998;Richards and Rea 2005;Sawyer et al 2006;Wertz et al 1992). These decisions include use of prenatal diagnosis, either to prepare for the birth of an affected child, or to have the option to terminate an affected pregnancy.…”