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Sociol Health Illn. 2009 Jan;31(1):81-97. doi: 10.1111/j.1467-9566.2008.01110.x.

Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments.

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1
ESRC Centre for Genomics in Society (Egenis), University of Exeter, Byrne House, St German's Road, Exeter EX1 4PJ, UK. S.E.Kelly@exeter.ac.uk

Abstract

Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at-risk parents as a means to a 'healthy' baby. This article reports the results of a qualitative study of parents whose children are clients of a state-wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of children with genetic conditions or impairments to choices with which women are confronted as prenatal testing technologies continue to proliferate. It reports the finding that a majority of parents in the study chose not to choose: avoiding future pregnancies, declining prenatal testing for subsequent pregnancies, or limiting testing to 'for information only'. 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. 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.

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