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Impairment experiences, identity and attitudes towards genetic screening : the views of people with Spinal Muscular Atrophy
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Boardman, Felicity K., Young, Philip J. and Griffiths, Frances (2018) Impairment experiences, identity and attitudes towards genetic screening : the views of people with Spinal Muscular Atrophy. Journal of Genetic Counseling, 27 (1). pp. 69-84. doi:10.1007/s10897-017-0122-7 ISSN 1059-7700.
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Official URL: https://doi.org/10.1007/s10897-017-0122-7
Abstract
Developments in genetics are rapidly changing the capacity and scope of screening practices. However, people with genetic conditions have been under-represented in the literature exploring their implications. This mixed methods study explores the attitudes of people with Spinal Muscular Atrophy (SMA) towards three different population-level genetic screening programmes for SMA: pre-conception, prenatal and newborn. Drawing on qualitative interviews (n= 15) and a survey (n=82), this study demonstrates that more severely affected individuals with early-onset symptoms (Type II SMA), are less likely to support screening and more likely to view SMA positively than those with milder, later onset and/or fluctuating symptoms (Types III/ IV SMA). Indeed, this clinically milder group were more likely to support all forms of screening and view SMA negatively. This paper highlights that screening is a complex issue for people with genetic conditions, and the nature of impairment experiences plays a critical role in shaping attitudes.
| Item Type: | Journal Article | ||||||||
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| Subjects: | R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine | ||||||||
| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Medical screening, Spinal muscular atrophy -- Patients -- Attitudes | ||||||||
| Journal or Publication Title: | Journal of Genetic Counseling | ||||||||
| Publisher: | Springer New York LLC | ||||||||
| ISSN: | 1059-7700 | ||||||||
| Official Date: | February 2018 | ||||||||
| Dates: |
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| Volume: | 27 | ||||||||
| Number: | 1 | ||||||||
| Page Range: | pp. 69-84 | ||||||||
| DOI: | 10.1007/s10897-017-0122-7 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||
| Date of first compliant deposit: | 2 June 2017 | ||||||||
| Date of first compliant Open Access: | 19 January 2018 | ||||||||
| RIOXX Funder/Project Grant: |
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