Project: Enhancing the Informed Consent Process: Supported decision-making and capacity assessment in clinical dementia research

Acronym Ensure
Duration 01/06/2016 - 31/05/2019
Project Topic This project aims to provide interdisciplinary recommendations for an action model of an informed consent process in clinical dementia research that a) enhances the capacity to consent of people with dementia, b) improves the assessment of decision-making capacity, c) protects those who do not have the capacity to consent, and d) guarantees the ethically justified inclusion of research subjects in clinical dementia research. For this purpose, four international project partners will cooperate on four interdisciplinary interlinked subprojects conducted in three successive phases. Each subproject will focus on the following steps and general objectives of our research: 1. review and analysis of current ethico-legal concepts, 2. identification of dementia- and country-specific demands, 3. development and evaluation of tools to enhance the informed consent process, 4. provision of interdisciplinary recommendations. The findings of each subproject will be continually shared to promote the achievement of the general objectives. The close interdisciplinary collaboration demonstrates novelty and originality by integrating normative ethico-legal and empirical gerontological analyses, and by considering the challenges facing European State legislators. The results of the project will provide an appropriate trade-off between autonomy and protection, promote legal certainty and raise confidence in the use of informed consent processes in clinical dementia research.
Call Ethical, Legal, and Social Aspects (ELSA) of Neuroscience

Project partner

Number Name Role Country
1 Johann Wolfgang Goethe-Universität Frankfurt Coordinator Germany
2 Universidade da Coruña Partner Spain
3 Ruhr-Universität Bochum Partner Germany
4 Universidade Católica Portuguesa Partner Portugal