TY - JOUR

T1 - Perceptions and Discourses Relating to Genetic Testing

T2 - Interviews with People with Down Syndrome

AU - Barter, Barbara

AU - Hastings, Richard

AU - Williams, Rebecca

AU - Huws, Jacqueline

PY - 2017/3

Y1 - 2017/3

N2 - BackgroundThe perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing.MethodEight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing.ResultsInterpretative 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.ConclusionsThe 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.

AB - BackgroundThe perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing.MethodEight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing.ResultsInterpretative 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.ConclusionsThe 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.

KW - discourse analysis

KW - Down Syndrome

KW - Penatal genetic testing

KW - qualitative methods

U2 - 10.1111/jar.12256

DO - 10.1111/jar.12256

M3 - Article

VL - 30

SP - 395

EP - 406

JO - Journal of applied research in intellectual disabilities : JARID

JF - Journal of applied research in intellectual disabilities : JARID

SN - 1360-2322

IS - 2

ER -