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, and a series of families referred with a potential diagnosis of Rett syndrome, and documents the scientific, clinical, patient and family experiences over a three-year period.

Although Rett syndrome itself is rare, it is one of some 2,000 such syndromes, and its genetic basis has recently...

More and more conditions are now 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 disease or condition? How do they communicate (or not communicate) about their shared heritage? How do they decide who to tell and who not to tell within their family? Richly illustrated with the real experiences of individuals and families, Risky Relations is essential reading for anthropologists and...