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Perceptions and discourses relating to genetic testing : interviews with people with Down syndrome
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Barter, B., Hastings, Richard P., Williams, R. R. and Huws, J. (2017) Perceptions and discourses relating to genetic testing : interviews with people with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 30 (2). pp. 395-406. doi:10.1111/jar.12256 ISSN 1468-3148.
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Official URL: http://dx.doi.org/10.1111/jar.12256
Abstract
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 sub themes: 1) A devalued condition and a valued life and 2) A question of โwant?โ Foucauldian Discourse Analysis highlighted two main discursive practices: 1) Social deviance and 2) 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.
| Item Type: | Journal Article | ||||||||
|---|---|---|---|---|---|---|---|---|---|
| Subjects: | R Medicine > RJ Pediatrics | ||||||||
| Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||||||
| Library of Congress Subject Headings (LCSH): | Down syndrome, Prenatal diagnosis | ||||||||
| Journal or Publication Title: | Journal of Applied Research in Intellectual Disabilities | ||||||||
| Publisher: | Wiley-Blackwell Publishing Ltd. | ||||||||
| ISSN: | 1468-3148 | ||||||||
| Official Date: | March 2017 | ||||||||
| Dates: |
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| Volume: | 30 | ||||||||
| Number: | 2 | ||||||||
| Page Range: | pp. 395-406 | ||||||||
| DOI: | 10.1111/jar.12256 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Restricted or Subscription Access | ||||||||
| Date of first compliant deposit: | 19 February 2016 | ||||||||
| Date of first compliant Open Access: | 11 May 2018 |
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