Best practices for consent in dementia research and data sharing

Monday, October 8, 2018

An expert team from Europe, Australia and Canada has developed best practice recommendations around consent processes for research involving people living with dementia. The recommendations focus on providing support and protection from exploitation in the decision-making process, clarifying regulatory frameworks, advance planning, authority to consent, and capacity assessment. The team conducted a scoping review to identify consent and capacity issues, as well as a comparative analysis of legislation and policy frameworks from eight countries. The recommendations were developed by a group of clinician-researchers, jurists, ethicists and patient advocates. The authors hope that consent practices can be harmonized across countries and research institutions to enable data sharing and thus speed up progress in dementia research. While the focus is on consent related to persons with dementia, the authors suggest that these best practices may also be adapted for research involving adults with stroke, traumatic brain injury, or other conditions that can affect someone’s ability to make decisions.

SOURCE: Alzheimer's and Dementia, October 2018
https://doi.org/10.1016/j.jalz.2018.05.011

DATE Retrieved: October 4, 2018

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