Thorogood, A;
Mäki-Petäjä-Leinonen, A;
Brodaty, H;
Dalpé, G;
Gastmans, C;
Gauthier, S;
Gove, D;
... Bobrow, M; + view all
(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.
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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.
| Type: | Article |
|---|---|
| Title: | Consent recommendations for research and international data sharing involving persons with dementia |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.jalz.2018.05.011 |
| Publisher version: | http://doi.org/10.1016/j.jalz.2018.05.011 |
| Language: | English |
| Additional information: | 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/). |
| Keywords: | Alzheimer's disease, Dementia, Consent process, Broad consent, International data sharing, Research participation, Supported decision-making, Will and preferences, Advance directive, Representative |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10056114 |
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