Professor of the Faculty of Law at the University of Technology Sydney.
Research associate of the Faculty of Health and Medicine at the University of Newcastle, Australia, and Hunter Medical Research Institute.
Ethics Hum Res. 2021 May;43(3):10-25. doi: 10.1002/eahr.500091.
Advance research directives (ARDs) enable people to document preferences for future research participation in the event of incapacity. This article reports on interviews with 11 dementia researchers in Australia that focused on the content of a prototype ARD and processes for making and using ARDs. Participants agreed that an ARD template should provide information to explain research and the rationale for making a directive, allow the person to nominate trusted individuals to be involved in future decisions, and record the person's general willingness or unwillingness to be involved in research. Providing a list of various research activities elicits preferences and risk tolerances in more detail. Priority groups for ARD implementation include people with a diagnosis involving progressive cognitive impairment and people interested in research. Researchers and health and legal professionals have a role in promoting ARDs. Our findings suggest that, as a voluntary strategy, ARDs could promote appropriate inclusion in research.
预先研究指示（ARD）使人们能够在丧失能力的情况下记录对未来参与研究的偏好。本文报告了对澳大利亚 11 名痴呆症研究人员的采访，重点是原型 ARD 的内容和制定和使用 ARD 的过程。参与者一致认为，ARD 模板应提供信息，以解释研究和制定指令的理由，允许个人提名可信赖的人参与未来的决策，并记录个人一般愿意或不愿意参与研究。提供一系列研究活动的清单可以更详细地了解偏好和风险承受能力。实施 ARD 的优先群体包括患有涉及进行性认知障碍的诊断的人和对研究感兴趣的人。研究人员以及卫生和法律专业人员在推广 ARD 方面发挥作用。我们的研究结果表明，作为一种自愿策略，ARD 可以促进适当纳入研究。
