Advance Directives in Dementia Research: The Opinions and Arguments of Clinical Researchers -- An Empirical Study

Autor/inn/en	Jongsma, Karin; van de Vathorst, Suzanne
Titel	Advance Directives in Dementia Research: The Opinions and Arguments of Clinical Researchers -- An Empirical Study
Quelle	In: Research Ethics, 11 (2015) 1, S.4-14 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1747-0161
DOI	10.1177/1747016114523422
Schlagwörter	Dementia; Patients; Research; At Risk Persons; Informed Consent; Ethics; Older Adults; Foreign Countries; Netherlands + Suchen Sie Ihr Suchwort? Demenz; Patient; Forschung; Risikogruppe; Ethik; Älterer Erwachsener; Ausland; Niederlande
Abstract	In 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. (As Provided).
Anmerkungen	SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01