Pelias Mary Kay
Louisiana State University Health Science Center, New Orleans, USA.
Mt Sinai J Med. 2006 May;73(3):605-8.
Questions related to testing children for adult-onset genetic diseases include many variables that generate different answers among different families. These issues include the biological nature of specific genes, concern about what benefits or harms may accrue from testing children, possible psychosocial sequelae, and ethical and legal concerns about personal autonomy. The shift in the physician-patient relationship from professional beneficence to patient autonomy has established the patient, or parents, as the primary decision-makers in questions about treatment or testing options. The role of parents as decision-makers for their own minor children has been reinforced by four seminal holdings of the United States Supreme Court. Assertions about protecting the future autonomy of children are invalid because minor children are not autonomous. Their parents, on the other hand, have a right--and perhaps even a duty--to exercise their own vested autonomy in making decisions that they believe are in the best interests of their own families. Geneticists are urged to provide clear and complete counseling to parents who seek testing for their children, and then defer to the parents as the primary decision-makers for their own minor children.
与对儿童进行成人发病型遗传疾病检测相关的问题包含许多变量，这些变量在不同家庭中会产生不同的答案。这些问题包括特定基因的生物学特性、对检测儿童可能带来的益处或危害的担忧、可能出现的心理社会后遗症，以及对个人自主权的伦理和法律考量。医患关系从专业的行善原则向患者自主权的转变，使得患者或其父母成为治疗或检测选项相关问题的主要决策者。美国最高法院的四项重要裁决强化了父母作为其未成年子女决策者的角色。关于保护儿童未来自主权的主张是无效的，因为未成年儿童并非自主个体。另一方面，他们的父母有权——甚至可能有义务——行使自身既得的自主权，做出他们认为符合自己家庭最佳利益的决定。敦促遗传学家为寻求对子女进行检测的父母提供清晰、完整的咨询服务，然后将父母作为其未成年子女的主要决策者予以尊重。
