TY  - JOUR
KW  - Alzheimer's disease
KW  -  Dementia
KW  -  Consent process
KW  -  Broad consent
KW  -  International data sharing
KW  -  Research participation
KW  -  Supported decision-making
KW  -  Will and preferences
KW  -  Advance directive
KW  -  Representative
ID  - discovery10056114
N2  - Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We formed a multi-disciplinary team to develop best practices for consent in data-intensive dementia research. We recommend that consent processes for research and data sharing support decision-making by persons with dementia, protect them from exploitation, and promote the common good. Broad consent designed to endure beyond a loss of capacity and combined with ongoing oversight can best achieve these goals. Persons with dementia should be supported to make decisions and enabled to express their will and preferences about participation in advance of a loss of capacity. Regulatory frameworks should clarify who can act as a representative for research decisions. By promoting harmonization of consent practices across institutions, sectors, and countries, we hope to facilitate data sharing to accelerate progress in dementia research, care, and prevention.
EP  - 1343
AV  - public
Y1  - 2018/10//
TI  - Consent recommendations for research and international data sharing involving persons with dementia
A1  - Thorogood, A
A1  - Mäki-Petäjä-Leinonen, A
A1  - Brodaty, H
A1  - Dalpé, G
A1  - Gastmans, C
A1  - Gauthier, S
A1  - Gove, D
A1  - Harding, R
A1  - Knoppers, BM
A1  - Rossor, M
A1  - Bobrow, M
JF  - Alzheimer's and Dementia
SN  - 1552-5279
UR  - http://doi.org/10.1016/j.jalz.2018.05.011
N1  - Copyright © 2018 The Authors. Published by Elsevier Inc. on behalf of the Alzheimer?s Association. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
IS  - 10
VL  - 14
SP  - 1334
ER  -