CanAge is collaborating with a team of leading researchers to explore ethical and legal frameworks and practices for the inclusion and consent of people living with dementia in important research.
Overview of the research
This study explores the ethical and legal frameworks and practices involved in the inclusion and consent of people living with dementia (PLWD) in dementia research across Canada.
People living with dementia may want to participate in research, however, a number of issues arise: incapacity is often presumed by researchers, ethics boards, and funders; contradictions exist about inclusion, rights and participation; guidelines vary across the country; and researchers may not be familiar with the legal frameworks in their jurisdiction or area of research.
This three-year project employs a multi-method approach comprised of legal research, literature and document review, and qualitative interviews to identify and understand the legal policy and research issues related to consent and the needs of Canadian dementia researchers.
The text-based legal research will clarify the laws and policies in each jurisdiction, and the literature and document review will focus on guidelines for inclusion, rights, and vulnerability. Interviews with dementia researchers in a range of disciplinary contexts across Canada will be conducted.
Results from these three methods will be used to develop modules and training resources for the research community, decision makers, advocates, PLWD, and their caregivers/supporters. This includes the development of jurisdictionally relevant guidelines on legal consent for medical and non-medical research with PLWD.
For further information about the project please contact: amanda.grenier@utoronto.ca or kjames@bcli.org.