Work in Progress
Consent to Participate in Research
The CCEL is part of a research team studying ethical and legal frameworks related to including people living with dementia in research across Canada and insuring consent to participate aligns with laws and best practices. People living with dementia may want to participate in research. However, a number of barriers can arise:
- Incapacity (to consent) is often presumed by researchers, ethics boards, and funders;
- Contradictions exist about inclusion, rights and participation;
- Best practice guidelines vary across the country; and
- Researchers may not be familiar with the laws that apply to their jurisdiction or area of research.
- Legal research to clarify the laws and policies in each jurisdiction;
- Literature and document review on guidelines related to inclusion, rights, and vulnerability; and
- Qualitative interviews with dementia researchers in a range of disciplinary contexts across Canada to assess understandings, needs, and challenges, and identify best practices and suggestions for change.
- Amanda Grenier, University of Toronto (social work)
- Deborah O’Connor, the University of BC (social work)
- Jim Mann, person living with dementia
- Laura Tamblyn Watts, CanAge
Below you will find additional, relevant and specific documentation, backgrounders, research, resources, media releases and summaries that have been, or will be incorporated into our final publications and study papers.
If you have questions about these or other specific documents, please reach out to BCLI using our contact page or at the bottom of each page of our website.