Research involving adults lacking capacity to consent can be ethically and legally challenging to conduct. Proxy decision makers are asked to make a participation decision based on the person’s wishes, yet preferences about research are often unknown. Advance research planning is a process for enabling people who anticipate incapacity to express and document their research preferences and to nominate and prepare proxies. Previous research has found widespread international support for introducing advance research planning, but identified ethical, legal and practical challenges. Despite growing endorsement, including Australia’s National Statement (2025) which supports the use of advance research planning and research directives, key questions remain about its acceptability, feasibility, and effectiveness in guiding participation decisions during periods of impaired capacity.
This presentation will share findings from a cross-sectional study investigating public and professionals’ attitudes towards introducing advance research planning in the UK and compare these with international experiences (Australia and North America) of implementing advance research planning into practice including the use of advance research directives.
Key findings include diverging views about how binding an advance research directive should be, doubts about whether the specificity threshold for ‘advance consent’ could be met, intersections with other anticipatory and legal planning arrangements, cultural considerations, and the policy and regulatory uncertainties that remain.
We conclude by discussing the ethical, legal, and practical implications for research involving adults lacking capacity to consent, and the need for future international work to focus on understanding who would benefit from advance research planning, and how this can be achieved.