Down's syndrome: cost, quality and value of life

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. a nd examines the lack of evidence about the value and quality of life with D own's syndrome. Tensions between the aims of prenatal screening policies to support women's personal choices, prevent distress, and reduce the sufferi ng and costs of disability, versus the inadvertent effects of screening whi ch can undermine these aims, are considered. Strengths and weaknesses in me dically and socially based models of research about disability, and their v alidity and reliability are reviewed. From exploratory qualitative research with 40 adults who have congenital conditions which are tested for prenata lly, interviews with five adults with Down's syndrome are reported. Intervi ewees discuss their relationships, education and employment, leisure intere sts, hopes, aspects of themselves and of society they would like to change, and their views on prenatal screening. 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 wh o have congenital conditions is required, if prenatal screening policies an d counselling are to be evidence based. (C) 2001 Elsevier Science Ltd. All rights reserved.