文章基本信息

标题：Questioning the Consensus: Managing Carrier Status Results Generated by Newborn Screening
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作者：Fiona Alice Miller ; Jason Scott Robert ; Robin Z. Hayeems 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2009
卷号：99
期号：2
页码：210-215
DOI：10.2105/AJPH.2008.136614
语种：English
出版社：American Public Health Association
摘要：An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are—in effect—required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits. NEWBORN SCREENING programs identify serious conditions for which early detection reduces mortality or morbidity.¹ Yet, in the pursuit of information about targeted disorders, screening may incidentally generate information about carrier status that is irrelevant to the infant's health. The consensus to date is that this information should be disclosed to parents—indeed, that to withhold such information would be unethical. In our view, the current practice of automatic disclosure of incidental carrier results reflects a bad marriage between clinical bioethics and public health praxis. It combines clinical bioethics' emphasis on autonomy and distaste for paternalism with the determination of public health to exercise collective authority and entertain justifiable compulsion. We seek to shed new light on this enduring dilemma. We considered the moral significance of reproductive risk information as well as the interests of the child to explore why automatic disclosure to parents might be morally troubling. We then considered how the application of distinctive ethical principles of public health could guide the development of sound policy on this issue.