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dc.contributor.authorBoardman, FK
dc.contributor.authorYoung, PJ
dc.contributor.authorGriffiths, FE
dc.date.accessioned2020-12-21T03:14:02Z
dc.date.available2020-12-21T03:14:02Z
dc.date.issued2018-02-01
dc.identifierpii: 10.1007/s10897-017-0122-7
dc.identifier.citationBoardman, F. K., Young, P. J. & Griffiths, F. E. (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. https://doi.org/10.1007/s10897-017-0122-7.
dc.identifier.issn1059-7700
dc.identifier.urihttp://hdl.handle.net/11343/257122
dc.description.abstractDevelopments 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 screening. 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.
dc.languageEnglish
dc.publisherWILEY
dc.rights.urihttps://creativecommons.org/licenses/by/4.0
dc.titleImpairment Experiences, Identity and Attitudes Towards Genetic Screening: the Views of People with Spinal Muscular Atrophy
dc.typeJournal Article
dc.identifier.doi10.1007/s10897-017-0122-7
melbourne.affiliation.departmentGeneral Practice
melbourne.source.titleJournal of Genetic Counseling
melbourne.source.volume27
melbourne.source.issue1
melbourne.source.pages69-84
dc.rights.licenseCC BY
melbourne.elementsid1246923
melbourne.contributor.authorGriffiths, Frances
dc.identifier.eissn1573-3599
melbourne.accessrightsOpen Access


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