Limits of confidentiality.
A patient is described, a woman of 60, who at that age was diagnosed as having Huntington's chorea, a genetic disease which is transmitted as an autosomal dominant. She had one daughter, who was married and lived abroad. The patient's mother and maternal aunt, it emerged during the consultations, had had the disease, and shortly after the diagnosis had been made the patient's sister was admitted to hospital with a repiratory condition, and in the course of treatment Huntington's chorea was diagnosed in her also. She had one daughter. Throughout, the problem was not only that of treating the patient herself, but the situation of all those of the family affected in any way. The patient's husband had not known of her medical history at the time of the marriage. At no time had the daughter been told. The discussion, in which seven doctors, a moral philosopher, and a social worker took part, centered on the basic issue of confidentiality in the case of a disease, from which would stem problems for the affected family through several generations. All were agreed that in these circumstances those affected must be told, but differed as to who should make some of the subsequent decisions. Some thought that having told of the diagnosis and its implications, the doctor should leave further decisions to those concerned; others that in a disease such as Huntington's chorea one is looking at part of a whole chain of genetic material, and, although the individual patient or potential patient is of course important, he or she must be seen in the genetic setting of the community. The participants also considered the psychological.
D003219:Confidentiality; D004992:Ethics, Medical; D030342:Genetic Diseases, Inborn; D006801:Humans