Affiliations: ARC DECRA Research Fellow, Centre for Values, Ethics and the Law in Medicine, The University of Sydney, Sydney, Australia
Correspondence:
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Correspondence to: Cynthia Forlini, PhD, Level 1, Medical Foundation Building K25, The University of Sydney, Camperdown, NSW 2006, Australia. Tel.: +61 286275354; E-mail: cynthia.forlini@sydney.edu.au.
Abstract: Robillard and Feng highlight incongruence between patient preferences and the procedural aspects of research ethics as they relate to protocols for dementia research. Their findings break ground for a reassessment of how research ethics, researchers, and participants (including patients and caregivers) approach participation in dementia research. However, it is unclear whether patient preferences may also herald a normative gap between how dementia research is being conducted and how it should be done. This response uses one of Robillard and Feng’s findings to illustrate how descriptive empirical data might be reinterpreted into normative questions that reframe current practices in the context of dementia research.
