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

Research output: Contribution to journalArticle

Authors

  • Global Alliance for Genomics and Health, Ageing and Dementia Task Team

Colleges, School and Institutes

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.

Details

Original languageEnglish
Pages (from-to)1334-1343
Number of pages10
JournalAlzheimer's & Dementia
Volume14
Issue number10
Early online date2 Jul 2018
Publication statusPublished - Oct 2018

Keywords

  • Alzheimer’s disease, Dementia, Consent process, Broad consent, International data sharing, Research participation, Supported decision-making, Will and preferences, Advance directive, Representative