Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia

Publication Type:
Journal Article
Citation:
Medical Law Review, 2020
Issue Date:
2020-03-02
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Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. The concept of ARDs emerged in literature in the 1980s and they have since been endorsed in some ethics guidelines and position statements. To date, 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. Recent law reform initiatives in Australia aim to provide a statutory framework for ARDs and the National Statement on Ethical Conduct in Human Research supports advance research planning, especially for participants who may experience cognitive impairment. 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, taking measures, accessing records, and taking 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.
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