EPIDEMIOLOGY AS LABELING - NEUROLOGICAL DISEASES AND STIGMA ON GUAM

This article focuses on the problematic community reaction to epidemio logical medical labeling and the social stigma associated with amyotro phic lateral sclerosis and parkinsonism-dementia, both of which are pr evalent among the indigenous Chamorro people of Guam. The Chamorro ter ms, lytico and bodig, and the medical diagnostic labels, ALS and PD, a re examined in regard to the organizational history of medical researc h on these diseases. In comparing the methodologies of two cross-secti onal epidemiological surveys (conducted in 1953 and 1987) to assess po int prevalence of these diseases, we found that although both surveys were capable of identifying new cases, the methodology used in 1953 wa s more appropriate, given the stigma associated with the local and med ical labels and the problems of confidentiality inherent in medical di sclosures in the small villages of Guam.