Does Transmission of Cystic Fibrosis between Parents and Children Alter Parental Decision-Making on Family Size and Birth Spacing, and Thus Impact Population Health? Emerging Answers from the French "Cystic Fibrosis, Family, and Society" Survey.

Peter D. Brandon, The State University of New York, Albany
Gil Bellis, Institut National d'Études Démographiques (INED)

Research documents that for a sizable minority of parents there is a risk that they will transmit a genetic disorder to their offspring. Though the risk of intergenerational transmission depends on many factors, when a genetic disease is transmitted the consequences for children, families, and society can be profound and long-lasting. Such is the case with the transmission of cystic fibrosis, a genetic autosomal recessive disorder with no cure. Furthermore, cystic fibrosis is a foremost example among hereditary diseases showing how little is known about the impact of the disease on couples’ reproductive decision-making; especially scarce is knowledge about the effect of a child with cystic fibrosis on the odds of a subsequent birth and timing of that subsequent birth. Using the French "Cystic Fibrosis, Family, and Society" survey, this study investigates the impact of the intergenerational transmission of cystic fibrosis on these aspects of couples’ reproductive decision-making: whether to have another child and when. We identify key factors affecting the probability and timing of a subsequent birth. Among them is the rank in the birth order of the child with cystic fibrosis. If these children are the firstborn, the odds of another child and the timing are significantly changed.

Keywords: Biodemography and genetics, Mortality and Longevity, Family Planning and Contraception, Linked data sets

See extended abstract.