Provided by Institute of Education EPrints
Priscilla Alderson 2001
Down’s syndrome: cost, quality and value of life.
Social Science and Medicine, 53:627-38.
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.
Key words
prenatal screening, quality of life, Down’s syndrome,
disability, learning difficulty, mental retardation