eprintid: 10056114
rev_number: 32
eprint_status: archive
userid: 608
dir: disk0/10/05/61/14
datestamp: 2018-09-14 15:41:30
lastmod: 2021-09-19 22:34:05
status_changed: 2019-02-25 15:27:23
type: article
metadata_visibility: show
creators_name: Thorogood, A
creators_name: Mäki-Petäjä-Leinonen, A
creators_name: Brodaty, H
creators_name: Dalpé, G
creators_name: Gastmans, C
creators_name: Gauthier, S
creators_name: Gove, D
creators_name: Harding, R
creators_name: Knoppers, BM
creators_name: Rossor, M
creators_name: Bobrow, M
title: Consent recommendations for research and international data sharing involving persons with dementia
ispublished: pub
divisions: UCL
divisions: B02
divisions: C07
divisions: D07
divisions: F86
keywords: Alzheimer's disease, Dementia, Consent process, Broad consent, International data sharing, Research participation, Supported decision-making, Will and preferences, Advance directive, Representative
note: 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/).
abstract: 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.
date: 2018-10
date_type: published
official_url: http://doi.org/10.1016/j.jalz.2018.05.011
oa_status: green
full_text_type: pub
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_id: 1582201
doi: 10.1016/j.jalz.2018.05.011
lyricists_name: Rossor, Martin
lyricists_id: MNROS52
actors_name: Cuccu, Clara
actors_id: CCCUC40
actors_role: owner
full_text_status: public
publication: Alzheimer's and Dementia
volume: 14
number: 10
pagerange: 1334-1343
issn: 1552-5279
citation:        Thorogood, A;    Mäki-Petäjä-Leinonen, A;    Brodaty, H;    Dalpé, G;    Gastmans, C;    Gauthier, S;    Gove, D;                 ... Bobrow, M; + view all <#>        Thorogood, A;  Mäki-Petäjä-Leinonen, A;  Brodaty, H;  Dalpé, G;  Gastmans, C;  Gauthier, S;  Gove, D;  Harding, R;  Knoppers, BM;  Rossor, M;  Bobrow, M;   - view fewer <#>    (2018)    Consent recommendations for research and international data sharing involving persons with dementia.                   Alzheimer's and Dementia , 14  (10)   pp. 1334-1343.    10.1016/j.jalz.2018.05.011 <https://doi.org/10.1016/j.jalz.2018.05.011>.       Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10056114/8/Rossor%20VoR%201-s2.0-S1552526018301651-main.pdf