Consent recommendations for research and international data sharing involving persons with dementia

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Consent recommendations for research and international data sharing involving persons with dementia. / Global Alliance for Genomics and Health, Ageing and Dementia Task Team.

In: Alzheimer's & Dementia, Vol. 14, No. 10, 10.2018, p. 1334-1343.

Research output: Contribution to journalArticle

Harvard

Global Alliance for Genomics and Health, Ageing and Dementia Task Team 2018, 'Consent recommendations for research and international data sharing involving persons with dementia', Alzheimer's & Dementia, vol. 14, no. 10, pp. 1334-1343. https://doi.org/10.1016/j.jalz.2018.05.011

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Global Alliance for Genomics and Health, Ageing and Dementia Task Team. / Consent recommendations for research and international data sharing involving persons with dementia. In: Alzheimer's & Dementia. 2018 ; Vol. 14, No. 10. pp. 1334-1343.

Bibtex

@article{b1a8aba876934f4782722d8616e0a5af,
title = "Consent recommendations for research and international data sharing involving persons with dementia",
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.",
keywords = "Alzheimer{\textquoteright}s disease, Dementia, Consent process, Broad consent, International data sharing, Research participation, Supported decision-making, Will and preferences, Advance directive, Representative",
author = "Adrian Thorogood and Anna M{\"a}ki-pet{\"a}j{\"a}-leinonen and Henry Brodaty and Gratien Dalp{\'e} and Chris Gastmans and Serge Gauthier and Dianne Gove and Rosie Harding and Knoppers, {Bartha Maria} and Martin Rossor and Martin Bobrow and {Global Alliance for Genomics and Health, Ageing and Dementia Task Team}",
year = "2018",
month = oct,
doi = "10.1016/j.jalz.2018.05.011",
language = "English",
volume = "14",
pages = "1334--1343",
journal = "Alzheimer's & Dementia",
issn = "1552-5260",
publisher = "Elsevier",
number = "10",

}

RIS

TY - JOUR

T1 - Consent recommendations for research and international data sharing involving persons with dementia

AU - Thorogood, Adrian

AU - Mäki-petäjä-leinonen, Anna

AU - Brodaty, Henry

AU - Dalpé, Gratien

AU - Gastmans, Chris

AU - Gauthier, Serge

AU - Gove, Dianne

AU - Harding, Rosie

AU - Knoppers, Bartha Maria

AU - Rossor, Martin

AU - Bobrow, Martin

AU - Global Alliance for Genomics and Health, Ageing and Dementia Task Team

PY - 2018/10

Y1 - 2018/10

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.

AB - 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.

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

U2 - 10.1016/j.jalz.2018.05.011

DO - 10.1016/j.jalz.2018.05.011

M3 - Article

VL - 14

SP - 1334

EP - 1343

JO - Alzheimer's & Dementia

JF - Alzheimer's & Dementia

SN - 1552-5260

IS - 10

ER -