Based on original ethnographic research with scientists, clinicians and families, this book examines Rett syndrome to illuminate more general issues concerning the construction and interpretation of diseases and syndromes. It derives from research with a specialist team of clinicians and scientists,[...]
Increasingly more conditions are now being identified as having a genetic component, and controversial new genetic technologies potentially have major consequences for social relations and self-identity. How do family members respond to the information that they have a genetically transmitted diseas[...]