Fondation Brocher | Emily West

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Emily West

Marie Curie Early Stage Research Fellow - Vrije Universiteit Amsterdam

02.02.2015-19.03.2015

The ethical implications and attitudes towards dementia research
The aim of the project is to conduct 1) a systematic review of the literature on stakeholders’ attitudes towards involvement in dementia research, and 2) a systematic review on the ethical issues associated with research on dementia. 1. The paper focusing on the empirical evidence regarding attitudes towards research has the following objectives: • Which stakeholders’ views regarding involvement in research are represented in the evidence and what are these? • Are patients and other stakeholders willing to participate in research on dementia? • How is participation in dementia research experienced? • What are the methodological obstacles and facilitating factors to participation in dementia research? • What are best practices to involve patients in research? 2. The paper which will focus on the main ethical issues in the debates on participation in dementia research has the following objectives: • To identify the central ethical issues and arguments characterising research on dementia. • To describe and appraise the origin and characteristics of the primary studies. • To assess the suitability of the evidence to guide research governance in dementia research.

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Emily West trained in both quantitative and qualitative social science research, and gained a BSc in Social Anthropology with professional accreditation in London in 2006. A sustained interest in palliative care and the end of life took her to Romania for research, and then on to a PhD in Medicine in Amsterdam, with time also spent in London and Genova - exploring how end of life care varies according to the setting it is delivered in.

Outside of research, she spent time working for the Wellcome Trust and gained a strong background in science communication and arts engagement, including public speaking, writing and event organisation. As well as research, she is currently also involved in arts-based projects which consider the different liminalities of death and the dying process through sound and digital exploration.

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