Policy choices available in genetic counseling for people at-risk for Huntington's disease

Staff on 94 wards in 78 Veterans Administration Medical Centers caring for Huntington's disease patients were interviewed by telephone to determine their policy, practice, and attitude regarding counseling HD families. Considerable variability among wards within a given hospital and among different hospital was reported. Presentation of genetic information was found to be significantly associated by statistical tests with existence of some kind of ward counseling policy, treatment on a neurology ward, active seeking-out of relatives, construction of pedigree charts, and specific staff designated to provide such counseling. Genetic discussions with families of HD patients and at-risk kindreds raise some sensitive ethical questions, notably the vigorous denial of disease in these families, the high suicide rate of those at-risk, and consideration of patients' rights regarding privacy of medical data. A consistent genetic information-giving policy, at least among wards of each hospital and possibly among all hospitals within a large hospital system, is recommended as a logical and desirable goal.