Faculty of Law, Law | Health | Justice Research Centre, University of Technology Sydney, Sydney, Australia.
Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine and Priority Research Centre for Health Behaviour, University of Newcastle, Australia; and Hunter Medical Research Institute, Newcastle, Australia.
Med Law Rev. 2020 May 1;28(2):375-400. doi: 10.1093/medlaw/fwaa003.
Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning.
预先指示（ARDs）是人们在未来丧失能力的情况下记录其参与研究意愿的一种方式。一些伦理准则和立场声明已经认可了 ARDs，然而，正式的法律认可有限。一些实证研究调查了研究人员和其他利益相关者对 ARDs 的看法，并测试了实施这些指示的策略。为了进一步了解这一领域，我们对澳大利亚的痴呆症研究人员（n=63）进行了一项调查，以调查他们对 ARDs 的看法。大多数调查受访者（>80%）认为 ARDs 将促进决策自主性，并为认知障碍者参与研究提供机会。受访者表示担心需要时没有指令可用（71%），伦理委员会不会接受 ARDs（60%）。很少有受访者使用过 ARDs，但大多数（57-80%）愿意为一系列研究活动提供 ARDs，例如观察行为和采取措施、采集血液样本或进行扫描。几乎所有受访者（92%）都同意当前的异议应优先于 ARD 中陈述的先前意愿。调查结果结合了对支持预先研究计划的伦理准则、法律和实践的关注。
