Alderson, P; Scott, P; Thapar, N; (2017) Living with a congenital condition: The views of adults who have cystic fibrosis, sickle cell anaemia, Down's syndrome, spina bifida or thalassaemia. In: Before Birth: Understanding Prenatal Screening. (pp. 156-171). Routledge

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Abstract

This chapter provides a small exploratory study which was conducted in England with forty adults who have either conditions which are screened for prenatally (five each with Down's syndrome and spina bifida), or conditions which are screened for in some areas (ten each with sickle cell, thalassaemia, and cystic fibrosis). It discusses the interviews, after a brief section on the related medical literature. The critical research about under-informed prenatal counselling is concerned with practitioners' knowledge about the tests, but seldom reviews knowledge, or lack of it, about the congenital conditions being tested for. The literature also says little about how prenatal prognoses are further complicated by uncertainty about the severity of each case and the unknown future life-style and opportunities of each potential person. Two men with Down's syndrome were interviewed together in the house where they had lived for fourteen years independently with two women who also had learning difficulties.

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