Consent to Participate in Research

Overview

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.

This three-year project employs a multi-method approach comprised of:

• 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.

The role of the CCEL to review and summarize all Canadian legislation that applies to medical, health, and social science research. The research will identify the unique features of each legal framework, including capacity to consent standards and the individuals with legal authority to provide substitute consent for a person who is not able to provide consent for themselves due to disability. The research will cover the authority of guardians, representatives, powers of attorney for personal care, temporary substitute decision-makers, and any other individuals often presumed to have the legal authority to provide substitute consent to participate in research. The objective of this work is to develop learning modules and training resources to help researchers to properly apply the law in the province or territory in which they practice, and support substitute decision-makers, advocates, people living with dementia, and family caregivers to understand their rights and responsibilities. The ultimate goal of this work is to support the meaningful inclusion of people living with dementia in research that impacts their lives. CCEL staff are working with an inter-disciplinary team that includes:

• 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