Wertz D C, Fanos J H, Reilly P R
Shriver Center for Mental Retardation, Waltham, MA 02254.
JAMA. 1994 Sep 21;272(11):875-81.
In the future there is likely to be a large array of DNA-based tests to diagnose single-gene disorders and to identify predispositions to genetically influenced disorders. This article focuses on ethical, legal, and psychological implications of testing healthy children and adolescents for such disorders. Testing may offer medical or psychological benefits but may harm parent-child bonds or the child's self-concept. Clinicians may encounter situations where they must weigh the child's or adolescent's wishes against wishes of parents. We examine the legal history and current status of minors as health care consumers; psychosocial research on their maturity to make choices; impact of testing on intrafamilial relationships; views of national commissions on appropriate ages of assent and full informed consent; ethical and legal requirements for competence in children and adolescents; and disclosure of genetic information. We propose guidelines for predictive genetic testing and counseling of children and discuss risks and benefits of testing.
未来可能会出现大量基于DNA的检测方法，用于诊断单基因疾病以及识别受遗传影响疾病的易感性。本文重点关注对健康儿童和青少年进行此类疾病检测所涉及的伦理、法律和心理影响。检测可能带来医学或心理益处，但也可能损害亲子关系或孩子的自我概念。临床医生可能会遇到必须权衡儿童或青少年的意愿与父母意愿的情况。我们研究了未成年人作为医疗消费者的法律历史和现状；关于他们做出选择的成熟度的社会心理研究；检测对家庭内部关系的影响；国家委员会对适当的同意年龄和完全知情同意的看法；儿童和青少年能力的伦理和法律要求；以及遗传信息的披露。我们提出了儿童预测性基因检测和咨询的指导方针，并讨论了检测的风险和益处。
