title: Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair.
abstract: Connecting theoretical discussion with empirical qualitative work, this article 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 disorder 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.
authors.affiliation: University of York, UK.
authors.forename: Maria
authors.initials: M
authors.lastname: Berghs
authors.affiliation: De Montfort University, UK.
authors.forename: Simon M
authors.initials: SM
authors.lastname: Dyson
authors.affiliation: University of York, UK.
authors.forename: Karl
authors.initials: K
authors.lastname: Atkin
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell / Q000208:ethnology / Q000235:genetics*; D044383:Black People; D017691:Caribbean Region; D005006:Ethnicity / Q000235:genetics; D005260:Female; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D008297:Male; D033262:Narration; D011247:Pregnancy; D011296:Prenatal Diagnosis; D036301:Qualitative Research; D012307:Risk Factors; D012805:Sickle Cell Trait / Q000235:genetics*; D013222:State Medicine; D006113:United Kingdom
keywords: and risk; carrier; disability; ethnicity; genetic; sickle cell