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dc.contributor.authorBerghs, Mariaen
dc.contributor.authorDyson, Simonen
dc.contributor.authorAtkin, Karlen
dc.date.accessioned2015-06-11T08:56:14Z
dc.date.available2015-06-11T08:56:14Z
dc.date.issued2015-07-24
dc.identifier.citationBerghs, M., Dyson, S.M. and Atkin, K. (2017) Resignifing the sickle cell gene: narratives of genetic risk, impairment and repair. Health, 21 (2), pp. 171-188en
dc.identifier.issn1363-4593
dc.identifier.urihttp://hdl.handle.net/2086/11038
dc.description.abstractConnecting theoretical discussion with empirical qualitative work, this paper examines how sickle cell became a site of public health intervention in terms of ‘racialised’ risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for SCD calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than ‘choices’, it is ‘risks’ and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.en
dc.language.isoenen
dc.publisherSageen
dc.subjectdisabilityen
dc.subjectethnicityen
dc.subjectgeneticsen
dc.subjectgenetic carrieren
dc.subjectrisken
dc.subjectscreeningen
dc.subjectsickle cellen
dc.subjectsociologyen
dc.titleResignifing the sickle cell gene: narratives of genetic risk, impairment and repairen
dc.typeArticleen
dc.identifier.doihttps://doi.org/10.1177/1363459315595850
dc.researchgroupUnit for the Social Study of Thalassaemia and Sickle Cellen
dc.peerreviewedYesen
dc.explorer.multimediaNoen
dc.funderNational Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programmeen
dc.projectidGrant Reference Number PB-PG-0610-22196en
dc.researchinstituteInstitute for Allied Health Sciences Researchen
dc.researchinstituteInstitute of Health, Health Policy and Social Careen


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