Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome

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DOI

  • Barbara Barter
    Institute of Psychiatry, Psychology and Neuroscience, London, UK
  • Richard Hastings
  • Rebecca Williams
    Betsi Cadwaladr University Local Health Board
  • Jacqueline Huws
Background
The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing.
Method
Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing.
Results
Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of ‘want?’ Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome.
Conclusions
The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.

Keywords

  • discourse analysis, Down Syndrome, Penatal genetic testing, qualitative methods
Original languageEnglish
Pages (from-to)395-406
JournalJournal of applied research in intellectual disabilities : JARID
Volume30
Issue number2
Early online date11 May 2016
DOIs
Publication statusPublished - Mar 2017
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