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  1. Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning.Victoria Shepherd, Kerenza Hood & Fiona Wood - 2023 - BMC Medical Ethics 24 (1):1-11.
    Background Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences. Methods A cross-sectional survey was conducted with two stakeholder (...)
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  • Challenges of anticipation of future decisions in dementia and dementia research.Julia Perry - 2022 - History and Philosophy of the Life Sciences 44 (4):1-29.
    Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what (...)
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  • ‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE).Victoria Shepherd, Kerenza Hood & Fiona Wood - 2024 - BMC Medical Ethics 25 (1):1-23.
    Background Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their ‘presumed will’. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals’ autonomy by ensuring that proxy decisions are (...)
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