Waiting for the family legacy: the experience of being at risk for Machado-Joseph disease.
Every offspring of an individual with Machado-Joseph disease has a 50% chance of inheriting the disease-causing gene, and symptoms usually do not appear until adult life, usually between the ages of 20 and 40. There are no predictive screening tests available for the disease. This paper, drawn from data collected as part of a larger study of the malady among descendants of Azorean-Portuguese in the Azores Islands and in northern California, explores the subjective state of genetic risk. Although individuals at risk vary in their reactions to the threat of Machado-Joseph disease, there are commonalities of concern that cross-cut individual differences. These differences and commonalities are important for what they might tell us about the experience of genetic risk in general, as well as Machado-Joseph disease in particular.
Boutté
M I
MI
Department of Anthropology, University of Nevada, Reno 89557.
D000328:Adult; D001007:Anxiety; D001294:Attitude to Health; D001394:Azores / Q000208:ethnology; D002140:California; D002874:Chromosome Mapping; D005260:Female; D005544:Forecasting; D006801:Humans; D008297:Male; D009069:Movement Disorders / Q000503:physiopathology; D011174:Portugal / Q000208:ethnology; D011336:Probability; D012307:Risk Factors; D013132:Spinocerebellar Degenerations / Q000175:diagnosis / Q000235:genetics / Q000503:physiopathology / Q000523:psychology*