School of Nursing, Midwifery and Social Work, University of Manchester, Manchester Academic Health Science Centre, Jean McFarlane Building, University Place, Oxford Road, Manchester, UK.
Health (London). 2012 Jul;16(4):448-63. doi: 10.1177/1363459311425513. Epub 2011 Nov 9.
Over recent years in the UK there has been growing interest in the potential for routinely collected NHS (National Health Service) patient data to be used for secondary purposes, facilitated by the potential of increasingly sophisticated electronic databases. This article is based on a critically reflective literature review which analyses the key debates pertaining to this issue. The work arose in the context of a programme of research concerning routine patient data use in neonatal care. The article includes analysis of commentary (opinion and ethical inquiry) as well as empirically derived claims. It aims to deconstruct the knowledge assumptions on which relevant research studies have been based or are proposed and it also incorporates ontological position and moral argument. Results are presented according to three predominant debates: the prevailing claim that all health research benefits civic society; the varieties of informed consent and choices open to patients regarding secondary uses of their data; and the 'rights and responsibilities' of patients when it comes to their data being used for research purposes. It examines the relevance of these themes specifically to the neonatal context and the implications for our own research, concluding that employing an alternative ethical model to the traditional professional one might be useful in order to provide a further perspective on the issue.
近年来，英国越来越关注将国民保健制度（NHS）中常规收集的患者数据用于次要目的的可能性，这得益于日益复杂的电子数据库的潜力。本文基于批判性文献回顾，分析了与该问题相关的主要争论。这项工作是在一项关于新生儿护理中常规患者数据使用的研究计划的背景下开展的。本文包括对评论（意见和伦理探究）以及经验主义主张的分析。它旨在解构相关研究工作所依据或提议的知识假设，并纳入本体论立场和道德论证。结果根据三个主要的争论呈现：普遍声称所有健康研究都使公民社会受益；患者在其数据的二次使用方面可以选择的各种知情同意和选择；以及当涉及到患者的数据用于研究目的时，他们的“权利和责任”。它特别考察了这些主题对新生儿背景的相关性，以及对我们自己研究的影响，结论是，采用传统专业伦理模式以外的替代伦理模式可能有助于为该问题提供进一步的视角。
