Social science & medicine
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Routine prenatal screening is based on the assumption that it is reasonable for prospective parents to choose to prevent a life with Down's syndrome. This paper questions whether Down's syndrome necessarily involves the costs, limitations and suffering which are assumed in the prenatal literature, and examines the lack of evidence about the value and quality of life with Down's syndrome. Tensions between the aims of prenatal screening policies to support women's personal choices, prevent distress, and reduce the suffering and costs of disability, versus the inadvertent effects of screening which can undermine these aims, are considered. ⋯ They show how some people with Down's syndrome live creative, rewarding and fairly independent lives, and are not inevitably non-contributing dependents. Like the other 35 interviewees, they illustrate the importance of social supports, and their problems with excluding attitudes and barriers. Much more social research with people who have congenital conditions is required, if prenatal screening policies and counselling are to be evidence based.