How do the genes for a disease get discovered? How have new genetic technologies changed how diseases are described, diagnosed and classified? How do scientists, clinicians and family members interpret the results of new genetics? Does the rise of genetic testing and diagnosis mean that more traditional clinical expertise is now redundant? These are among the issues addressed in this book, which describes the fashioning of a disease - the making and re-making of the ’landscape’ of a syndrome - and its implications for our understanding of the impact of new genetics.
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Katie Featherstone is Senior Lecturer within the Cardiff School of Nursing and Midwifery and a Research Fellow at Cesagen, Cardiff University. A sociologist of medicine, her recent ethnographic work includes an examination of the social consequences and clinical utilization of new genetic technologies, specifically within dysmorphology, a specialism of clinical genetics, and an examination of kinship and disclosure in the context of genetic information (The Wellcome Trust).
Paul Atkinson is Distinguished Research Professor of Sociology at Cardiff University. He is an Academician of the Academy of Social Sciences. Recent publications include Everyday Arias: An Operatic Ethnography and Contours of Culture, with Sara Delamont and William Housley. Together with Sara Delamont he edits the journal Qualitative Research. He is currently conducting ethnographic work in art-makers’ studios.
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