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Dementia research and advance consent: it is not about critical interests
  1. Karin Rolanda Jongsma,
  2. Suzanne van de Vathorst
  1. Department of Medical Ethics and Philosophy of Medicine, Erasmus Medical Centre Rotterdam, Rotterdam, The Netherlands
  1. Correspondence to Karin Rolanda Jongsma, Department of Medical Ethics and Philosophy of Medicine, Erasmus Medical Centre Rotterdam, Office NA 21.17, PO box 2040, Rotterdam 3000 CA, The Netherlands; k.jongsma{at}erasmusmc.nl

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Tom Buller presents a rich and thoughtful proposal for using advance directives in the context of research.1 He argues that the arguments presented in support of advance directives within the context of treatment also count within the context of research. Furthermore, he argues that research participation can be a critical interest and, therefore, continues to exist during the process of dementia, and furthermore, that a critical interest should overrule experiential interests, e.g, the experience of burden, during the research trial. We appreciate his contribution to the debate on advance directives and agree with his general claim that advance directives in the context of dementia research are valuable. However, we disagree with the statement that research and treatment do not differ significantly. Moreover, we argue that labelling research participation a ‘critical interest’ is too strong a claim for most people. We will provide more convincing arguments for the use of advance research directives and suggest how the value of advance research directives should be understood in practice.

Buller is right in arguing that it is a pity advance directives are not used more frequently within the context of research. Research with people who suffer from dementia is important and we should search for morally acceptable means to increase the research opportunities in this group. Biomedical research, however, differs not just gradually, but fundamentally from the treatment context, because of its aims: the main aim of treatment is to benefit the patients, whereas …

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