Huefner D S
Department of Special Education, University of Utah.
Am J Law Med. 1986;12(2):171-205.
In recent years the federal government has attempted to intervene in certain family-medical decisions to withhold treatment from seriously handicapped newborns with life-threatening conditions. Invoking section 504 of the Rehabilitation Act of 1973, which prohibits discrimination against "otherwise qualified handicapped" individuals, the Reagan Administration promulgated regulations allowing federal government investigations of such decisions. Recently, the U.S. Supreme Court upheld lower court decisions invalidating these "Baby Doe" regulations. The federal government's fall-back position is reflected in the Child Abuse Prevention and Treatment Amendments of 1984, requiring states accepting funds under the Child Abuse Prevention and Treatment Act to establish and maintain procedures to assure that cases of medical neglect of handicapped infants are investigated by the states. Although the primary oversight of parental decision-making has been returned to the states where it has traditionally belonged, the federal government's definition of medical neglect of handicapped infants with life-threatening conditions is an ethically inadequate response to the complex needs of the handicapped child, the family, the medical profession, and society as a whole. After examining the relevance of Kantian, utilitarian, and Rawlsian ethical positions, the author contends that an effective governmental policy, capable of enforcement and acceptance by the public, must utilize the strengths of each philosophy and reflect the pragmatism of American society.
近年来，联邦政府试图干预某些家庭医疗决策，即不给患有危及生命疾病的严重残疾新生儿进行治疗。里根政府援引1973年《康复法》第504条，该条禁止歧视“其他合格的残疾人”，颁布了相关规定，允许联邦政府对此类决策进行调查。最近，美国最高法院维持了下级法院的判决，判定这些“婴儿多伊”规定无效。联邦政府的后备立场体现在1984年的《预防虐待儿童和治疗修正案》中，该修正案要求接受《预防虐待儿童和治疗法》资金的各州建立并维持相关程序，以确保各州对残疾婴儿医疗忽视案件进行调查。尽管对父母决策的主要监督权已回归到传统上所属的各州，但联邦政府对患有危及生命疾病的残疾婴儿医疗忽视的定义，在伦理上无法充分应对残疾儿童、家庭、医疗行业以及整个社会的复杂需求。在审视了康德主义、功利主义和罗尔斯主义伦理立场的相关性后，作者认为，一项能够有效执行并为公众所接受的政府政策，必须利用每种哲学的优势，并反映美国社会的实用主义。
