BERGHS, Maria orcid.org/0000-0002-6512-7921, Dyson, Simon M. and Atkin, Karl Michael orcid.org/0000-0003-1070-8670 (2015) Resignifying the sickle cell gene:Narratives of genetic risk, impairment and repair. Health. ISSN 1461-7196
Abstract
Connecting 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 sickle cell 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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Keywords: | DISABILITY,CARRIER,ETHNICITY,Genetic,Sickle cell |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Sciences (York) > Health Sciences (York) |
Funding Information: | Funder Grant number NIHR-CCF PB-PG-0610-22196 |
Depositing User: | Pure (York) |
Date Deposited: | 01 Dec 2015 11:26 |
Last Modified: | 16 Oct 2024 12:32 |
Published Version: | https://doi.org/10.1177/1363459315595850 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1177/1363459315595850 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:92394 |
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Filename: Accepted_Health_version_2.docx
Description: Accepted Health - version 2