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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

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Official URL: https://doi.org/10.1007/s10897-017-0122-7

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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
Alternative Title:
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
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:
DateEvent
February 2018Published
30 June 2017Available
31 May 2017Accepted
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
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
ES/K002090/1[ESRC] Economic and Social Research Councilhttp://dx.doi.org/10.13039/501100000269

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