BACKGROUND Vulnerable groups, e.g. persons with mental illness, neurological deficits or dementia, are often excluded as participants from research projects because obtaining informed consent can be difficult and tedious. This may have the consequence that vulnerable groups benefit less from medical progress. Vulnerable persons are often supported by a legal guardian in one or more demands of their daily life. We examined the attitudes of legal guardians and legally supervised persons towards medical research and the conditions and motivations to participate in studies. METHODS We conducted a cross-sectional study with standardized surveys of legal guardians and legally supervised persons. Two separate questionnaires were developed for the legal guardians and the supervised persons to asses previous experiences with research projects and the reasons for participation or non-participation. The legal guardians were recruited through various guardianship organizations. The supervised persons were recruited through their legal guardian and from a previous study among psychiatric patients. The data were analysed descriptively. RESULTS Alltogether, 82 legal guardians and 20 legally supervised persons could be recruited. Thereof 13 legal guardians (15.6%) and 13 legally supervised persons (65.0%) had previous experience with research projects. The majority of the guardians with experience in research projects had consented the participation of their supervised persons (n = 12 guardians, 60.0%; in total n = 16 approvals). The possible burden on the participating person was given as the most frequent reason not to participate both by the guardians (n = 44, 54.4%) and by the supervised persons (n = 3, 30.0%). The most frequent motivation to provide consent to participate in a research study was the desire to help other patients by gaining new scientific knowledge (guardians: n = 125, 78.1%; supervised persons: n = 10, 66.6%). CONCLUSIONS Overall, an open attitude towards medical research can be observed both among legal guardians and supervised persons. Perceived risks and no sense recognized in the study are reasons for not participating in medical research projects.

中文翻译：

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有和没有以前研究经验的法定监护人和受法律监督的人对参与研究项目的态度：定量横断面研究。

背景 弱势群体，例如患有精神疾病、神经缺陷或痴呆症的人，经常被排除在研究项目之外，因为获得知情同意是困难和乏味的。这可能会导致弱势群体从医疗进步中获益较少。弱势群体在日常生活中的一项或多项需求往往得到法定监护人的支持。我们调查了法定监护人和受法律监督的人对医学研究的态度以及参与研究的条件和动机。方法 我们对法定监护人和受法律监督的人进行了标准化调查，进行了横断面研究。为法定监护人和受监管人开发了两个单独的问卷，以评估以前参与研究项目的经验以及参与或不参与的原因。法定监护人是通过各种监护机构招募的。受监督的人是通过他们的法定监护人和之前对精神病患者的研究招募的。数据进行了描述性分析。结果共招募法定监护人82人，受法律监督人员20人。其中法定监护人13人（15.6%）和受法律监督人员13人（65.0%）有过研究项目经历。大多数具有研究项目经验的监护人都同意其监督人员的参与（n = 12 名监护人，60.0%；总共 n = 16 人批准）。监护人 (n = 44, 54.4%) 和被监督者 (n = 3, 30.0%) 都认为参与人可能承受的负担是不参与的最常见原因。同意参与研究的最常见动机是希望通过获得新的科学知识来帮助其他患者（监护人：n = 125，78.1%；监督人员：n = 10，66.6%）。结论 总的来说，在法定监护人和受监督的人中都可以观察到对医学研究的开放态度。研究中感知到的风险和没有意识到的意义是不参与医学研究项目的原因。同意参与研究的最常见动机是希望通过获得新的科学知识来帮助其他患者（监护人：n = 125，78.1%；监督人员：n = 10，66.6%）。结论 总的来说，在法定监护人和受监督的人中都可以观察到对医学研究的开放态度。研究中感知到的风险和没有意识到的意义是不参与医学研究项目的原因。同意参与研究的最常见动机是希望通过获得新的科学知识来帮助其他患者（监护人：n = 125，78.1%；监督人员：n = 10，66.6%）。结论 总的来说，在法定监护人和受监督的人中都可以观察到对医学研究的开放态度。研究中感知到的风险和没有意识到的意义是不参与医学研究项目的原因。