Sickle Cell and the Social Sciences: Health, Racism and Disablement

Description

Sickle cell disease (SCD) is a severe chronic illness and one of the world’s most common genetic conditions, with 400,000 children born annually with the disorder, mainly in Sub-Saharan Africa, India, Brazil, the Middle East and in diasporic African populations in North America and Europe. Biomedical treatments for SCD are increasingly available to the world’s affluent populations, while such medical care is available only in attenuated forms in Africa, India and to socio-economically disadvantaged groups in North America and Europe. Often a condition rendered invisible in policy terms because of its problematic association with politically marginalized groups, the social study of sickle cell has been neglected. This illuminating volume explores the challenges and possibilities for developing a social view of sickle cell, and for improving the quality of lives of those living with SCD. Tackling the controversial role of screening and genetics in SCD, the book offers a brief thematic history of approaches to the condition, queries the role of ethnicity and includes a discussion of how the social model of disability can be applied, as well as featuring chapters focusing on athletics, prisons and schools. Bringing together a wide range of original research conducted in the USA, the UK, Ghana and Nigeria, Sickle Cell and the Social Sciences is anchored in the discipline of sociology, but draws upon a diverse range of fields, including public health, anthropology, social policy and disability studies. Cover Half Title Series Page Title Page Copyright Page Table of Contents List of figures List of tables Acknowledgements Introduction The structure of the book 1 Sickle cell and the complications of science Sickle cell disease/sickle cell disorder (SCD) Sickle cell symptoms Treatment for sickle cell disorders Inheritance of sickle cell disorders Distinguishing sickle cell anaemia, sickle cell disease and sickle cell trait Sickling and “normal sickling” Genotype and phenotype Theoretical probability and empirical occurrence A genetic risk of 1-in-4 Sickle cell and science Conclusion 2 Why genes are not “for” sickle cell Introduction Genes and genomes The organism The physical environment The collective environment Conclusion 3 A long history of sickle cell: sickle cell and malaria Introduction The genesis of sickle cell Conclusion 4 A short history of sickle cell: the twentieth century in the USA Introduction Medicine and sickle cell Carib’s Leap and Jump Jim Crow: how sickle cell became linked to colonialism and racism 1930s: sickle cell emerges in the context of racialized poverty 1940s: science prospers but not people with SCD 1950s: sickle cell and political blackness 1960s: disablement, racism and sickle cell 1970s: detaching sickle cell from broader causes 1980s: the politics of susceptibility 1990s: visibility and priorities Sickle cell in popular culture Conclusion 5 Sickle cell trait and athletics Introduction Sickle cell trait and sudden death Exercise-related deaths and the military Exercise-related deaths and US athletics SCT and unexpected death in athletics Conclusion 6 Sickle cell and deaths in state contact Introduction The concept of institutional racism in criminal justice Sickle cell and deaths in custody The analytical limitations of “institutional racism” Conclusion 7 Ethnicity, migration and sickle cell Introduction Migration and sickle cell Race, ethnicity and genes associated with sickle cell The emergence of sickle cell as an ethnicized disease The power of ethnicity in creating genetic knowledge of populations Contesting sickle cell/thalassaemia services through ethnicity Selective antenatal screening for sickle cell and thalassaemia Conclusion 8 Genetic carriers and antenatal screening Introduction Screening for beta-thalassaemia in twentieth-century Screening for thalassaemia in the UK Time, manner, place Sickle cell screening: gender, ethnicity and disablement Making sense of being a sickle or thalassaemia carrier Conclusion 9 Newborn screening Introduction The spleen and SCD Before newborn screening Newborn screening in the USA and the UK Newborn screening in Africa and India Newborn sickle cell screening in Kumasi, Ghana Sickle cell disease in India What about sickle cell trait newborns? Conclusion 10 SCD and the social model of disability Introduction The social model of disability Challenges to the social model of disability Stigma Challenging stigma, part 1 Challenging stigma, part 2 Challenging stigma, part 3 Conclusion 11 Sickle cell and social policy: the case of SCD and schools Introduction Challenging the framing of sickle cell in schools research Silent strokes and SCD Sickle cell in schools in early twenty-first-century England A guide to school policy on sickle cell Conclusion Conclusion Epilogue References Index