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Decisions About Testing and Termination of Pregnancy for Different Fetal Conditions: A Qualitative Study of European White and Pakistani Mothers of Affected Children

Authors: Shenaz Ahmed & Jenny Hewison & Josephine M. Green & Howard S. Cuckle & Janet Hirst & Jim G. Thornton

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Abstract
The aim of this study is to explore reasons for and against prenatal testing and termination for a range of
conditions in women from two different ethnic backgrounds.
A total of 19 Pakistani and European women in West Yorkshire, UK, who either had a child with a genetic
condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes regarding prenatal
testing and termination for 30 different fetal conditions and were interviewed about their reasons for their responses.
There were more similarities than differences between the Pakistani and European white women. The most important
factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a
child with the genetic condition, in particular, whether the child would be “suffering.” This was described as either
physical suffering, as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social
factors. These findings highlight the need for detailed information about the potential quality of life for the child
and the child’s family to enable parents to make informed choices, particularly the extent to which the child is likely to
suffer, the nature of such potential “suffering” and the extent to which the child could lead a “normal” life. The findings
also challenge stereotypes about cultural differences in attitudes about termination of pregnancy.

Keywords Prenatal testing . Termination . Decisions .
Choice . Pakistani