title: Down's syndrome: cost, quality and value of life.
abstract: 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. Strengths and weaknesses in medically and socially based models of research about disability, and their validity and reliability are reviewed. From exploratory qualitative research with 40 adults who have congenital conditions which are tested for prenatally, interviews with five adults with Down's syndrome are reported. Interviewees discuss their relationships, education and employment, leisure interests, 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 who have congenital conditions is required, if prenatal screening policies and counselling are to be evidence based.
authors.affiliation: Social Science Research Unit, Institute of Education, University of London, UK. p.alderson@ioe.ac.uk
authors.forename: P
authors.initials: P
authors.lastname: Alderson
mesh_terms: D000025:Abortion, Eugenic; D000328:Adult; D001007:Anxiety; D001294:Attitude to Health; D017281:Cost of Illness; D004314:Down Syndrome / Q000191:economics / Q000523:psychology*; D004739:England; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D007407:Interviews as Topic; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis; D011788:Quality of Life; D015203:Reproducibility of Results; D012107:Research Design; D013240:Stereotyping; D026712:Value of Life