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    Resignifing the sickle cell gene: narratives of genetic risk, impairment and repair

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    Main Article [Version 2, post-print] (183Kb)
    Date
    2015-07-24
    Author
    Berghs, Maria;
    Dyson, Simon;
    Atkin, Karl
    Metadata
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    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 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.
    Description
    Citation : Berghs, M., Dyson, S.M. and Atkin, K. (2017) Resignifing the sickle cell gene: narratives of genetic risk, impairment and repair. Health, 21 (2), pp. 171-188
    URI
    http://hdl.handle.net/2086/11038
    DOI
    https://doi.org/10.1177/1363459315595850
    ISSN : 1363-4593
    Research Group : Unit for the Social Study of Thalassaemia and Sickle Cell
    Research Institute : Institute for Allied Health Sciences Research
    Research Institute : Institute of Health, Health Policy and Social Care
    Peer Reviewed : Yes
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    • School of Allied Health Sciences [1415]

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