BACKGROUND In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn towards greater patient and public involvement in health care decisions, in the US, Canada and EU, guidelines and legislation implemented to protect patients and facilitate acute research with adults who are unable to give consent have been developed with little involvement of the lay public. This paper reviews research examining public opinion regarding RWC for research in emergency situations, and whether the rules and regulations permitting research of this kind are in accordance with the views of those who ultimately may be the most affected. METHODS Seven electronic databases were searched: Medline, Embase, CINAHL, Cochrane Database of Systematic Reviews, Philosopher's Index, Age Info, PsychInfo, Sociological Abstracts and Web of Science. Only those articles pertaining to the views of the public in the US, Canada and EU member states were included. Opinion pieces and those not published in English were excluded. RESULTS Considering the wealth of literature on the perspectives of professionals, there was relatively little information about public attitudes. Twelve studies employing a range of research methods were identified. In five of the six questionnaire surveys around half the sample did not agree generally with RWC, though paradoxically, a higher percentage would personally take part in such a study. Unfortunately most of the studies were not designed to investigate individuals' views in any depth. There also appears to be a level of mistrust of medical research and some patients were more likely to accept an experimental treatment 'outside' of a research protocol. CONCLUSION There are too few data to evaluate whether the rules and regulations permitting RWC protects - or is acceptable to - the public. However, any attempts to engage the public should take place in the context of findings from further basic research to attend to the apparently paradoxical findings of some of the current surveys.

中文翻译：

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在紧急情况下未经成年人同意的临床研究：对患者和公众意见的审查。

背景 在紧急研究中，获得知情同意是有问题的。非常需要研究为因危及生命和衰弱而入院的患者开发和改进治疗方法，但未经同意的研究 (RWC) 问题引发了对不道德行为和个人自主权丧失的担忧。与政策和实践一致，使患者和公众更多地参与医疗保健决策，在美国、加拿大和欧盟，为保护患者和促进对无法表示同意的成年人的急性研究而实施的指南和立法几乎没有制定公众的参与。本文回顾了关于 RWC 在紧急情况下研究的公众舆论研究，以及允许此类研究的规章制度是否符合最终可能受影响最大的人的意见。方法 检索了七个电子数据库：Medline、Embase、CINAHL、Cochrane 系统评价数据库、Philosopher's Index、Age Info、PsychInfo、Sociological Abstracts 和 Web of Science。仅收录与美国、加拿大和欧盟成员国公众意见相关的文章。意见稿和非英文发表的文章被排除在外。结果 考虑到关于专业人士观点的大量文献，关于公众态度的信息相对较少。确定了十二项采用一系列研究方法的研究。在六次问卷调查中的五次中，大约一半的样本总体上不同意 RWC，尽管自相矛盾的是，更高比例的人会亲自参与这样的研究。不幸的是，大多数研究并非旨在深入调查个人的观点。似乎对医学研究也存在一定程度的不信任，一些患者更有可能接受“超出”研究方案的实验性治疗。结论 数据太少，无法评估允许 RWC 的规则和条例是否保护或为公众所接受。然而，任何让公众参与的尝试都应该在进一步基础研究的结果的背景下进行，以关注当前一些调查的明显自相矛盾的结果。不幸的是，大多数研究并非旨在深入调查个人的观点。似乎对医学研究也存在一定程度的不信任，一些患者更有可能接受“超出”研究方案的实验性治疗。结论 数据太少，无法评估允许 RWC 的规则和条例是否保护或为公众所接受。然而，任何让公众参与的尝试都应该在进一步基础研究的结果的背景下进行，以关注当前一些调查的明显自相矛盾的结果。不幸的是，大多数研究并非旨在深入调查个人的观点。似乎对医学研究也存在一定程度的不信任，一些患者更有可能接受“超出”研究方案的实验性治疗。结论 数据太少，无法评估允许 RWC 的规则和条例是否保护或为公众所接受。然而，任何让公众参与的尝试都应该在进一步基础研究的结果的背景下进行，以关注当前一些调查的明显自相矛盾的结果。结论 数据太少，无法评估允许 RWC 的规则和条例是否保护或为公众所接受。然而，任何让公众参与的尝试都应该在进一步基础研究的结果的背景下进行，以关注当前一些调查的明显自相矛盾的结果。结论 数据太少，无法评估允许 RWC 的规则和条例是否保护或为公众所接受。然而，任何让公众参与的尝试都应该在进一步基础研究的结果的背景下进行，以关注当前一些调查的明显自相矛盾的结果。