Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome
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In: Journal of applied research in intellectual disabilities : JARID, Vol. 30, No. 2, 03.2017, p. 395-406.
Research output: Contribution to journal › Article › peer-review
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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 -