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Participation in biobanks for research by incapacitated adults: review and discussion of current guidelines
Author(s) -
Togni Elena,
Dierickx Kris,
Porteri Corinna
Publication year - 2014
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.4059
Subject(s) - biobank , dementia , informed consent , psychology , research ethics , medicine , psychiatry , alternative medicine , bioinformatics , pathology , disease , biology
Objective Biobanks for research and genetic research are important opportunities to create new understanding of complex disorders, such as psychiatric disorders and dementia. The management of biobanks for subjects with psychiatric disorders or dementia raises additional challenges because of the ethical issues regarding the potentially impaired decision‐making capacities of the subjects. The aim of this paper is to study (i) how guidelines address the matter and (ii) how they can be implemented in real research situations with patients suffering from psychiatric disorders and dementia. Method We collected and analysed all the relevant guidelines and position papers from national and international organizations dealing with research on biological materials and selected documents mentioning the participation of incapacitated adults in genetic research and biobanks. Results Eighteen of the 30 analysed documents contain explicit references to adults who are unable to give consent. The main topics addressed by the guidelines are the following: (i) informed consent; (ii) principles of non‐therapeutic research; and (iii) ethics committee review. Conclusions In biomedical research, guidelines are an important instrument for facilitating research while promoting subjects' rights and well‐being. Compared with legally binding documents, guidelines are more flexible and can be more easily revised according to evolving research situations and for adaptation to real persons and research settings. We suggest measures to implement the analysed guidelines taking into consideration the case for the participation of patients with neuropsychiatric disorders, who can have impairment of decision‐making capacities without being obviously incompetent, in genetic research and biobanks. Copyright © 2013 John Wiley & Sons, Ltd.