成人发病疾病预测性检测中出现的伦理和法律困境：亨廷顿舞蹈症的经验
Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease.
作者信息
Huggins M, Bloch M, Kanani S, Quarrell O W, Theilman J, Hedrick A, Dickens B, Lynch A, Hayden M
机构信息
Department of Medical Genetics, University of British Columbia, Vancouver, Canada.
出版信息
Am J Hum Genet. 1990 Jul;47(1):4-12.
The goal of predictive testing is to modify the risk for currently healthy individuals to develop a genetic disease in the future. Such testing using polymorphic DNA markers has had major application in Huntington disease. The Canadian Collaborative Study of Predictive Testing for Huntington Disease has been guided by major principles of medical ethics, including autonomy, beneficence, confidentiality, and justice. Numerous ethical and legal dilemmas have arisen in this program, challenging these principles and occasionally casting them into conflict. The present report describes these dilemmas and offers our approach to resolving them. These issues will have relevance to predictive-testing programs for other adult-onset disorders.
预测性检测的目的是改变当前健康个体未来患遗传病的风险。使用多态性DNA标记的此类检测已在亨廷顿病中得到了主要应用。加拿大亨廷顿病预测性检测协作研究一直遵循医学伦理的主要原则，包括自主性、有益性、保密性和公正性。该项目中出现了许多伦理和法律困境，对这些原则提出了挑战，有时还使它们陷入冲突。本报告描述了这些困境，并提供了我们解决这些困境的方法。这些问题将与其他成人发病疾病的预测性检测项目相关。
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