Advance directives in dementia research: The opinions and arguments of clinical researchers - an empirical study

TitleAdvance directives in dementia research: The opinions and arguments of clinical researchers - an empirical study
Publication TypeJournal Article
Year of Publication2015
AuthorsJongsma, K, van de Vathorst, S
JournalResearch Ethics
Date Published2015
Publication Languageeng
KeywordsAdvance , Attitudes , Clinical , Dementia , Informed , Medical , research , Vulnerable
AbstractIn order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive (ARD) whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative study (13 interviews). We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. 
NotesJongsma, Karin 1; Email Address: van de Vathorst, Suzanne 1; Affiliation: 1: Erasmus Medical Center, the Netherlands; Source Info: Mar2015, Vol. 11 Issue 1, p4; Subject Term: ADVANCE directives (Medical care); Subject Term: DEMENTIA -- Treatment; Subject Term: RESEARCH; Subject Term: MEDICAL research personnel; Subject Term: CLINICAL trials; Subject Term: DEMENTIA patients; Subject Term: RESEARCH subjects (Persons); Subject Term: INFORMED consent (Medical law); Subject Term: ATTITUDES; Author-Supplied Keyword: advance directives; Author-Supplied Keyword: dementia; Author-Supplied Keyword: informed consent; Author-Supplied Keyword: research ethics; Author-Supplied Keyword: vulnerable populations; NAICS/Industry Codes: 541712 Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology); Number of Pages: 11p; Document Type: Article