Alderson, P; Scott, P; Tharpar, N; Lauren, M; (1998) Views of adults with a congenital condition about prenatal tests: cost, quality and value of life in Britain and Finland.

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Abstract

Views of adults with a congenital condition about prenatal tests: cost, quality and value of life in Britain and Finland Prenatal tests for congenital conditions are offered increasingly commonly. They offer prospective parents the choice of preventing lives which are likely to be of poor quality and to require costly support. We looked for evidence to support these assumptions about the value and cost of life, in semi-structured interviews with 50 adults with a congenital condition. The six conditions involved were thalassaemia, cystic fibrosis, sickle cell, spina bifida, Down's syndrome and, in Finland, diastrophic dysplasia. Interview topics included family and friends, education and employment, pleasures and dissatisfactions, and views on prenatal testing. Far from needing to be dependent, the adults described active rewarding lives, and the many ways they contribute to their families and local communities. They all said that prejudice and pessimistic expectations about their condition were the main barriers preventing them from living life more fully. They would like prenatal counselling to be more accurately informed about the reality of living with a congenital condition. The interviewees are not claimed to be typical; too little social research has yet been conducted to see how representative they might be. However, they raise urgent questions about the need for more realistic and wide-ranging evidence on which to base prenatal screening policies and counselling.

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