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

机译:为亨廷顿病高危人群提供遗传咨询的政策选择

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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 hospitals 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.
机译:美国退伍军人管理局(Veterans Administration)78个医疗中心94个病房的工作人员接受了电话采访,以确定他们对亨廷顿舞蹈症家庭咨询的政策、做法和态度。据报道,特定医院内和不同医院之间的病房之间存在相当大的差异。通过统计测试发现,遗传信息的呈现与某种病房咨询政策的存在、神经内科病房的治疗、积极寻找亲属、谱系图的构建以及指定提供此类咨询的特定工作人员显着相关。与HD患者家庭和高危亲属的基因讨论提出了一些敏感的伦理问题,特别是这些家庭中对疾病的强烈否认,高危人群的高自杀率,以及对患者医疗数据隐私权的考虑。建议至少在每家医院的病房之间,并可能在大型医院系统内的所有医院之间制定一致的遗传信息提供政策,这是一个合乎逻辑且理想的目标。

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