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  1. (Re)Conceptualising ‘good’ proxy decision-making for research: the implications for proxy consent decision quality.Victoria Shepherd - 2022 - BMC Medical Ethics 23 (1):1-11.
    People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...)
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  • Dementia research and advance consent: it is not about critical interests.Karin Rolanda Jongsma & Suzanne van de Vathorst - 2015 - Journal of Medical Ethics 41 (8):708-709.
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  • Advance research directives: avoiding double standards.Bert Heinrichs - 2021 - BMC Medical Ethics 22 (1):1-8.
    BackgroundAdvance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). The introduction of ARDs could thus establish a double standard in the sense that within the (...)
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