Genetics and Global Public Health：Sickle Cell and Thalassaemia

Sickle cell and thalassaemia are among the world’s most common genetic conditions. They are especially common in Africa, Brazil, the Caribbean, the Middle East and Asia. They affect all ethnic groups but they particularly impact on minority ethnic groups in North America, Europe and Australasia. Much research has focused on clinical, laboratory and genetic studies of these conditions. Through a wide-ranging selection of readings based on social scientific research into sickle cell and thalassaemia, this book seeks to redress this imbalance. This is important as, through an examination of the different social, economic and cultural contexts of the lives of people living with sickle cell or thalassaemia, the contributors demonstrate that people are more than the sum of their genes and that their life experiences are rarely derived solely from the clinical severity of their condition but depend on the social context of their lives.

Genetics and Global Public Health presents a new concluding chapter which highlights the critical nature of social science research for sickle cell and thalassaemia communities, providing key insights into the social contexts of human behaviour and analysing how societal arrangements could change to assist people living with either condition. It will be of great interest to postgraduate and research students as well as professionals working in the field of public health.

This book was originally published as a special issue of the journal Ethnicity and Health.

Simon M. Dyson is Professor of Applied Sociology and Director of the Unit for the Social Study of Thalassaemia and Sickle Cell, De Montfort University, UK. He is author of Ethnicity and Screening for Sickle Cell/Thalassaemia (2005) and Sickle Cell and Deaths in Custody (2009, with Gwyneth Boswell).
Karl Atkin is a sociologist, and Professor in the Department of Health Sciences at the University of York, UK. He is author of The Politics of Sickle Cell and Thalassaemia (2001, with Elizabeth Anionwu) and co-editor of Race and Social Policy (2012, with Gary Craig, Sangeeta Chattoo and Ronny Flynn).

1. Sickle cell and thalassaemia: global public health issues come of age Simon M. Dyson & Karl Atkin 2. Informing choice or teaching submission to medical authority: a case study of adolescent transitioning for sickle cell patients Carolyn Moxley Rouse 3. ‘He’s the dad isn’t he?’ Gender, race and the politics of prenatal screening Kate Reed 4. ‘All her children are born that way’: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya Vicki M. Marsh, Dorcas M. Kamuya & Sassy S. Molyneux 5. Familial influences on antenatal and newborn haemoglobinopathy screening Fiona Ulph, Tim Cullinan, Nadeem Qureshi & Joe Kai 6. Ethical implications and practical considerations of ethnically targeted screening for genetic disorders: the case of hemoglobinopathy screening Cynthia F. Hinton, Althea M. Grant & Scott D. Grosse 7. Living with sickle cell disease: traversing ‘race’ and identity Charmaine D. Royal, Charles R. Jonassaint, Jude C. Jonassaint & Laura M. De Castro 8. Respect, trust, and the management of sickle cell disease pain in hospital: comparative analysis of concern-raising behaviors, preliminary model, and agenda for international collaborative research to inform practice James Elander, Mary Catherine Beach & Carlton Haywood Jr 9. Race and social attitudes about sickle cell disease Shawn M. Bediako & Kimberly R. Moffitt 10. Barriers to conceiving sibling donors for sickle cell disease: perspectives from patients and parents Gina A. Jae, Adam K. Lewkowitz, Joanna C. Yang, Liang Shen, Amal Rahman & Gustavo Del Toro 11. Organized ambivalence: when sickle cell disease and stem cell research converge Ruha Benjamin 12. ‘I can die today, I can die tomorrow’: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition Jemima A. Dennis-Antwi, Lorraine Culley, David R. Hiles & Simon M. Dyson 13. Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers Costrie Ganes Widayanti, Annastasia Ediati, Moedrik Tamam, Sultana M.H. Faradz, Erik A. Sistermans & Anne Marie C. Plass 14. Sickle Cell and Thalassaemia: Why Social Science is Critical to Improving Care and Service Support Simon M. Dyson and Karl Atkin