Facing Tests for Genetic Disorders, Parents Avoid Pregnancy

LiveScience Staff

Date: 11 February 2009 Time: 07:02 AM ET

Parents of children with genetic disorders tend to avoid future pregnancies rather than undergoing prenatal testing, a new study indicates.

In the study of U.S. parents with children affected by genetic conditions or impairments, more than two-thirds chose not to have any more children rather than accepting tests to identify or avoid the birth of another affected child, the study found. Of the parents who did have further children, a majority chose not to make use of prenatal screening or testing.

"Prenatal testing procedures (to detect genetic conditions or fetal anomalies) were perceived by many parents as presenting rather than resolving risks," said lead researcher Susan Kelly of the University of Exeter. "Many parents rejected the possibility of being confronted with the choice of termination or continuation of an affected pregnancy."

The survey, funded by the National Institutes of Health, was detailed last month in the journal Sociology of Health and Illness.

"These decisions do not reflect simple rejection of medical intervention, opposition to abortion, and/or affirmation of a positive parenting experience with an affected child," Kelly said in a statement today. "Rather, choosing to avoid the condition of choice appears to be a strategy of responsible parenting that emerges from ambivalence towards the options presented by reproductive technologies."

The choices were for most parents shaped by a heightened sense of the risks inherent in reproduction and of the limits of medicine's ability to predict and control them, Kelly explained.

"Experiencing the birth of an affected child for some parents exposed the limitations of medical knowledge and practice, and placed medicine alongside other forms of interpretation and evidence," she said. "Interventions such as genetic testing for many were associated with uncertainty and a loss of control for parents as responsible caretakers and decision makers."