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

Date
2015-07-24
Authors
Berghs, Maria
Dyson, Simon
Atkin, Karl
Journal Title
Journal ISSN
ISSN
1363-4593
Volume Title
Publisher
Sage
Peer reviewed
Yes
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
Keywords
disability, ethnicity, genetics, genetic carrier, risk, screening, sickle cell, sociology
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
Research Institute
Institute for Allied Health Sciences Research
Institute of Health, Health Policy and Social Care