Binedell J, Soldan J R, Scourfield J, Harper P S
Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff, UK.
J Med Genet. 1996 Nov;33(11):912-8. doi: 10.1136/jmg.33.11.912.
Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.
主动自行要求进行亨廷顿氏病预测性检测的青少年给检测提供者带来了两难困境。由于缺乏关于基因检测对未成年人影响的实证证据,基于不伤害、尊重个人自主和保密等伦理原则的现行政策和指导方针,通常排除对未成年人的检测。有人认为,在亨廷顿氏病预测性检测方案中坚持基于年龄的排除标准与英国关于未成年人同意接受医疗的判例法趋势不一致。此外,发展心理学的贡献以及对青少年决策能力的研究表明,青少年能够对自己的健康和个人生活做出明智的选择。本文提出了制定此类请求评估方法的标准,并讨论了就临床医生对不确定性的容忍度而言,逐案评估同意能力的影响。